Sleep Genius

Snooze alarm

My great uncle, Collins Mason, and Carl A. Imhoff invented this!

https://patents.google.com/patent/US2636337A/en?q=collins&q=mason+alarm

An Arousing Discovery on Catalepsy: Orexin Regulates Vestibular Motor Functions: Neuron

An Arousing Discovery on Catalepsy: Orexin Regulates Vestibular Motor Functions: Neuron

Lack of sleep

http://articles.mercola.com/sites/articles/archive/2016/03/03/sleep-deprivation-effects.aspx?e_cid=20160303Z1_DNL_art_1&utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=20160303Z1&et_cid=DM99252&et_rid=1384317314

Form of baclofen works better at treating narcolepsy

Form of baclofen works better at treating narcolepsy: Neuroscientists at SRI International have found that a form of baclofen, a drug used to treat muscle spasticity, works better at treating narcolepsy than the best drug currently available when tested in mice.

Experiencing Narcolepsy

PWNs experience NC in many different ways with various symptoms.  I have been to many Dr appts where I was asleep most of the time I was there.  It might have looked like I was drunk because I was staggering around, slurring my speech and having problems concentrating.  It's especially worse.  Now I make sure I take something warm because cold temperatures will make me go to sleep.  Warm temperatures keep me awake.  Sometimes I will open my bedroom window when it's 30 degrees outside because I'm too warm.

What do I do?  I have to record my appt before my appt - describe my symptoms, what I need help with, etc - because it might not be comprehended from my speech while I'm there.  You might say - take an advocate.  That works well if the person I take is familiar with my condition.  The best advocate I had has Hoshimotos.  She knows what it's like to not be able to think, have memory problems and being dead tired and sleepy.  She could understand my problems


Below is how another PWN experiences narcolepsy:

Ok so when I have one of my worst days these are things I experience I want to know what some of you go thru I get everybody is different in every case but a lot of us feel that with narcolepsy the surface is merely being scratched so I'm gonna post a normal daily list also
On a bad day:
Irritability, struggle with using my hands to do things, I struggle speaking, i.e.. shuddering finding the words to talk pauses in speaking, losing my thoughts,
Memory, my legs don't work, extreme weakness, muscles move like jello
I get that dead numb empty feeling in my parts, almost collapsing I feel as if I'm shaking though I'm perfectly still, I feel extremely exhausted more then normal, to weak to move on my own, emotional, headaches, dizzy, blurred vision, hotter then usually to where I sit in a cold shower or open the Windows, "it's winter in Wisconsin pretty cold teens and lower"
Normal day: normal tired, ok strength, typically warm body temperature, tolerable RLS, IBS, numbness due to taking glutamate along with slower speech & motor skills, always losing things,forgetting stuff constantly,
Uncontrolled muscle twitching, and dipping when walking or standing I use a cane so I usually don't fall
"A week ago I was with my boyfriend he started to slow.dance with me n my legs kept dipping as I made my way to the couch got really tired I felt as if checked out for about 5 or 10 mins and then I was fine" I think it was an attack but I'm really not sure as it doesn't happen much I just get weak knees n dip a few times and that was the worst I remember???
All I can remember right now as yesterday was a bad day but I'd like to hear what some of you others go through as this is still kind of new for me

Communicating with your doctor about Narcolepsy

The other day, I posted a question on Facebook:  If you wanted to find out if a doctor knew something about narcolepsy (not a sleep doctor but a regular doctor), what questions would you ask him/her?

One of my friends gave a really good reply.  I have posted it below.

 

I wouldn't even bother asking a doc who is not a sleep doc, and even then that gets tricky to do without offending them.

My PCP is an internist with a specialty in geriatrics. He freely admits I know more about N than he ever will and when he has a new doc in his office on an internship, he has me educate them on N.

Perhaps, Anne, a better way might be to say, "I realize that N is barely covered in medical school and if you went to med school more than 15 years ago they still thought it was a psychological problem. However, it would be very helpful in establishing our doctor-patient relationship if you'd agree to two things: 1. Be honest with me about what you do or don't know about N, and 2. Accept that I may know more than you on that subject and be willing to listen to me.

I think also, and I've done this, make it mandatory that your PCP and your sleep doc share notes after every visit to one or the other. As well, you might suggest to the primary that he talk to the sleep doc and get confirmation that you know what you're talking about. Gives you much more credibility. Alternatively, you might try getting a letter of introduction from your sleep doc that states specifically that you are a well educated patient and what you say is well informed and should be taken seriously. Come to think of it, that might even be the best approach.

Further, it *IS* important to remember that docs have worked very hard to get to be where they are, and even if some of them are arrogant bastards we still do need to recognize that they are thinking that it's pretty chutzpadig of you to presume to tell them they don't know what they're talking about. And never say "I saw this thing on the net that said...". Only say, "I read an article (on PubMed but don't include this) in such and such a journal that said..." Citing the journal is very important to establishing your credibillity. Print it out and bring it with you. I've done that. It takes all the wind out of their sails.