Hello Pam,
Welcome aboard! Pam, you've made many intriguing statements. I feel obliged to comment and I believe you will appreciate what I have to say.
<I'm not diagnosed with narcolepsy, but I'm interested in learning more about it. A certain branch of my family (on my father's side) has HH. My three kids and I have it, too. Ours is pretty benign and does not seem to bother us much. It's just a succession of pretty, bright colors before we really fall asleep entirely. Kind of like a slow-motion kalidescope. In my case, it comes with an intense sensation of being very attuned to the creation of the thing, as though it could be produced by my own intention--although I think, realistically, that I probably can't really control it!
Your description of the scenario at sleep onset sounds pretty "normal" to me. It isn't HH. Although normal people can also experience a kind of HH, what you've described is truly "apple pie" normal while entering stage one of NREM sleep. PWN do not enter stage 1 of NREM at sleep onset. We enter REM immediately if not before the head hits the pillow. (Hence the name SOREMPs--Sleep Onset REM Periods which is one indicator of narcolepsy during a sleep study.) As you've noted hynpnagogic hallucinations occur at the border of wake state to
know more about my personal experiences with HH, read the archives. Or if you have a specific question, ask me.
In essence HH is frightening dreaming. It is usually, but not always, accompanied by sleep paralysis. Long distance truck drivers who are sleep deprived as well as PWN have seen many a fence post turn into a human being or other animal! When it occurs during a state of wakefulness, I call it "dreaming with my eyes open."
Here are some webpages you might like to read to get an idea regarding HH.
http://www.expage.com/page/narchyp
http://www.holistic-online.com/Remedies/Sleep/sleep_narc_symptoms_4.htm
<My sleeping and dreaming is kind of unusual, and I don't know whether it fits with a pattern of narcolepsy, or is just something unique to me. I sleep poorly and wake up easily, as a rule. I
probably waken at least eight times a night.
PWN have what is called "disrupted night time sleep." We simply can't sleep because it is part of our normal pattern not to sleep for 6-8 hours as does the normal population. However, PWN get about as much total sleep as a normal person. The EDS is not caused by the disrupted night time sleep, but the fact that we get little or none of stage 3 and stage 4 NREM sleep which is the deep physically restorative sleep.
If you sleep poorly, you must discover why. Go to google and type in "sleep hygiene." You'll find websites which have good tips for producing a restful sleep
<Sometimes I have to
get up and do something because I'm just so alert.
I'm glad to hear that you are taking advantage of the time.
<I don't have any
experiences of being told I did something during the night that I
was not aware of, though.
Neither do most narcoleptics. Most narcoleptics do not sleep walk but we can be quite active in bed while we sleep.
<During the day, I'm okay in the morning, but sleepy as the day goes
on and I seem to require a nap during the afternoon, even a very
short one. I am able to fall asleep briefly just about any place if
it's quiet. When I took my son to the Grayhound station the other
day I fell asleep in a row of seats next to my son waiting for him
to line up for his bus. I woke up to a panhandler asking him for
money! Fortunately, he handled himself well. When I wake up from a
little nap like this, I'm usually very alert. But I didn't have to
intervene at all, I'm glad to say!
It sounds to me as though you've trained your son well!
A PWN usually needs a nap within two hours of rising. EDS in PWN is unrelenting sleepiness. Medication allows us to appear and be somewhat normal, but the need to nap is always present. EDS in PWN is sleepiness--and sleeping--at inappropriate times such as while eating. It's disgusting to wakeup with a mouthful of partially chewed food! It is inappropriate and downright dangerous to fall asleep while driving. It is inappropriate to fall asleep while conversing on the phone or with someone in person. Lots of people, including PWN, fall asleep in the movies and other sedentary situations such as the one you experienced in the bus station. When I was young I would fall asleep on the city bus, but it was very fitful sleeping. I kept waking up thinking I would miss my stop. Now, I simply can't fall asleep in public nor on a bus of any sort. I've trained myself not to.
<I can't say that I have a problem with nightmares as a rule, because
although they are often vivid, I seem to have very complete control
of my dreams. If the situation got bad enough, I'd just walk
through a wall in my dream and go somewhere else.
Great! I'm glad you don't have nightmares. (I consider HH a nightmare!) It seems you are a skilled lucid dreamer. A lot of people have to train themselves to be aware during dreaming that they are dreaming. You do it naturally!
<My reading seems to indicate that this level of control of my dreams suggests I'm not
sleeping very deeply.
As I mentioned above, you are a lucid dreamer; you've learned how to control your dreams. I don't believe you can draw the conclusion that you aren't sleeping deeply based on the fact that you can control your dreams. Deep restorative sleep occurs during NREM sleep when you aren't dreaming.
<My 22-year-old daughter has just been diagnosed with "probable MS".
I thought you guys might be interested to know that cataplexy is
sometimes a symptom of MS. She has a number of lesions showing on
her MRI, so I guess the part of her brain that is supposed to
produce the neurotransmitters indicated in cataplexy might be
affected. She also has HH, as so many of us in the family do.
I am very sorry to hear that your daughter might have MS. Make the doc come forth with a definite diagnosis. Either she has MS or she doesn't. There is no "probable" about it. MS is a well defined neurological disorder and there is no excuse for the doc to come up with this probable crap. If I could wave my magic wand, I would turn her MS into narcolepsy or better yet into normalcy--without any neurologic impairment nor involvment.
Based on what you have written above, she DOES NOT experience cataplexy. Cataplexy exists only in narcolepsy. There is only one exception to that rule and that is in the very rare condition of "Isolated Cataplexy" which has been documented as occuring in persons who do not experience any other symptoms of narcolepsy nor any other neurological disorder. They simply experience cataplexy.
Additionally, PWN do not demonstrate leisons in MRIs although there is an obvious abnormality in PWN. It can't be seen until the PWN is dead and brain tissue of the hypothalmus is examined under a high powered microscope.
<I've seen her "fall" two times with cataplexy--once, after
experiencing relief, and once after experiencing surprise. The
recent time, she had just gone shopping for new jeans and turned out
to need a smaller size than she had expected. She got home alright,
but while she was telling me about it, whoomp! She ended up with
her butt on the floor, her legs just collapsed beneath her. She
talked to me the whole time. It was strange. I said, "What's going
on? What are you doing?" She said, "Oh, you know I always fall
down when I'm surprised." She pulled herself back up by grabbing
the kitchen table and when her legs would support her, she went on
with what she had been doing.
Gleaned from The MS Information Sourcebook produced by the National MS Society.
http://www.nationalmssociety.org/\Sourcebook-symptoms.asp
So that you can get an idea about the differences between narcolepsy and ms, I've stolen this brief description from the website I've mentioned above
The initial symptoms of MS are most often:
· Difficulty in walking;
The primary symptoms in narcolepsy: EDS and Cataplexy. EDS usually develops first although it can develop after the onset of cataplexy. We don't have difficulty walking unless we are having a cataplectic attack. At that time, we simply cannot walk and unless control is regain, postural collapse occurs. People with MS have difficulty walking most of the time. People with MS don't experience inappropriate sleepiness
· Abnormal sensations such as numbness or pins and needles;
and
PWN don't experience numbness unless some other problem is present; nor do we experience tinging nor "pins and needles" sensation.
· Pin and loss of vision due to optic neuritis, an inflammation of the optive nerve
PWN don't have loss of vision; the only time we might not be able to see clearly is during cataplexy when the eyes roll upwards into the head into sleep position
Less common initial symptoms may include:
· Tremor;
· Incoordination;
· Slurred speech;
Yes, during cataplexy, PWN experience shaking, quivering, nodding, bobbing, jerking etc; we appear incoordinated and lacking grace and we experience slurred speech and unless control is regained we cannot speak nor move. Recovery is nearly always spontaneous. Cataplexy is transient. These symptoms in MS are not transient. The causes are not the same although I do sincerely understand how you could misunderstand them.
· Sudden onset of paralysis, similar to a stroke; and
The paralysis in MS is an entirely different scenario than sleep paralysis which is what cataplexy is. Cataplexy is sudden extremely rapid intrusive--intrusive during wake state--transient sleep paralysis as the result of the expression of some normal emotion. Although it can be bad at times, varies from person to person, and can be debilitating, cataplexy is not the same as the extremely serious continuous paralysis experienced by people with MS. PWN learn to avoid situations which are conducive to cataplexy. Additionally, medications are available which eliminate cataplexy totally. As far as I know, there are no consistent medications which relieve paralysis and other symptoms in persons with MS.
· Decline in cognitive functionthe ability to think, reason, and remember
PWN have an associate amnesia which occurs during "automatic behavior" which is quite close to the sleep/wake border. We don't black out; we blank out. That is we can't remember what occured, but if something should remind us, it comes back like dream recall. PWN do not have problems with cognitive function. However, sleepiness does make learning a bit more difficult, but we have developed alternative ways to overcome this kind of learning disability.
PRIMARY SYMPTOMS are a direct result of demyelination, the destruction of
myelinthe fatty sheath that surrounds and insulates nerve fibers in the central nervous systemand of damage to the nerve fibers themselves. Demyelination and neuronal damage impair transmission of nerve impulses to muscles and other organs. The symptoms include
weakness, numbness, tremor, loss of vision, pain, paralysis, loss of balance, bladder and bowel dysfunction, and cognitive changes. Many of these symptoms can be managed effectively with medication, rehabilitation, and other medically based methods.
SECONDARY SYMPTOMS are complications that arise as a result of the primary symptoms. For example, bladder dysfunction can cause repeated urinary tract infections. Inactivity can result in disuse weakness (not related to demyelination), poor postural alignment and trunk control, muscle imbalances (adaptive shortening and/or stretch weakness),
decreased bone density (increasing risk of fracture), and shallow, inefficient breathing. Paralysis can lead to the secondary symptom of bedsores. While secondary symptoms can be treated, the optimal goal is to avoid them by treating the primary symptoms.
TERTIARY SYMPTOMS are the social, vocational, and psychological
complications of the primary and secondary symptoms. A person who
becomes unable to walk or drive may lose his or her livelihood. The strain
of dealing with a chronic neurologic illness may disrupt personal
relationships. Depression is frequently seen among people with MS. It
may be a primary, secondary, or tertiary symptom. Professional
assistance from psychologists, social workers, physical and occupational
therapists, and public health agencies is indicated for managing many
tertiary symptoms.
Pam, I can understand why you would think that she has cataplexy because of her falling which seems to have an emotional trigger. As you've read above, loss of balance and poor coordination are symptoms of MS. PWN do not experience loss of balance and most of us don't experience poor coordination as such except during an attack of cataplexy. (Heaven forbid me to see a cochroach. They cause me to have cataplexy--I'm so uncoordinated that I can't hit 'em and they get away. I'm glad I don't have cochroaches!) Yes, it would be easy for you to think that she experiences cataplexy. Most of the time, it takes a trained observer to detect cataplexy in a PWN. Most of our docs have never observed cataplexy occuring in PWN. I was having cataplexy during a visit with my doc and had to inform him what had occured when I regained my speech.
That's when I started trying to find out what that was called. So
eventually I ended up here.
Interested in any comments on my family's experiences!
Go to the url below and read about narcolepsy. You will need adobe acrobat reader to see it if you click on the link. It might be a good idea for you to download the information, but if you merely want to read it, go to Google and enter the term narcolepsy. It is available there in HTML.
www.nhlbi.nih.gov/health/public/sleep/narcolep.pdf
I am not a medical professional, but I am a practicing, experienced narcoleptic and know the disorder in and out, upside down, and any other way of thinking about it. Not one hour of the day passes but what I am not reminded that I have narcolepsy. If I were in your shoes, I believe a second opinion about the MS is needed PDQ.
If you believe that you have a sleep disorder, then have a sleep study test. Based on your description, I believe some other phenomenon is occuring. Pam, could that phenomenon be denial on your part that your daughter has MS? I'm not saying that to be unkind, believe me. In a few days I will post a message that will demonstrate I know what you are going through. I would appreciate your thoughts.
Nancy