What does Catalepxy look like. video included

Many people wonder what Cataplexy looks like.  So a few years back I asked my family anytime they saw me going  into one to record it.  So here is a video of me in an episode.  In this video you will see me attempting to put the straw paper back on to blow at my sister.  If you notice I start to have a hard time moving my hands and functioning and eventually lose support of my neck.  I can't keep my eyes open, or even speak.  They come almost as quick as they go.

Where I'm at in my battle with Narcolepsy and Cataplepxy

I was diagnosed July 2017 with narcolepsy and catalepsy. It is December 2017 and this is where I'm at. I found out about a study for the drug xyrem it involves trips to Florida and seeing a specialist from New Zealand. This study is to try and modify xyrem to once a day verse twice a day. As of right now you have to take it when you go to bed and then wake up in the middle of the night and take it again. It has a very strict sleep schedule you have to maintain so many hours of sleep so if you have to get up early that means you have to go to bed early. If you can't maintain the strict sleep schedule many have experienced harsh side effects that don't make the benefits worth it.

If this drug xyrem works for me what will it do? It will change my life, it will regulate my sleep in what I mean as in going into REM sleep and registering it as I entered it. And it will also balance the cataplexy to where I'll have nearly no experience at all.

At this time my doctor wants me to go on Nuvigil which is a knockoff of Ritalin. And as an adult side effects with heart conditions is only a partial stimulant and it helps regulate your awakeness and supposed to last about 6 hours. These drugs are expensive and will run over a hundred grand a year to maintain. Without them you have to force yourself to function and hope that the people you work with our understanding and compassionate.



Narcolepsy with cataplexy is caused by the loss of a chemical in the brain called hypocretin.  
                    What is Hypocretin?
Orexin, also called hypocretin, is a neuropeptide that regulates arousal, wakefulness, and appetite. The most common form of narcolepsy, in which the sufferer briefly loses muscle tone (cataplexy), is caused by a lack of orexin in the brain due to destruction of the cells that produce it.

                    Sleep Oxygen
Everyone's oxygen levels in the blood are lower during sleep, due to a mildly reduced level of breathing. Also, some alveoli drop out of use during sleep. If your waking oxygen saturation is greater than about 94 percent on room air, it is unlikely that your saturation during sleep will fall below 88 percent.

Finally Receiving Answers after 14 years. Getting told you have Narcolepsy and Cataplexy

Let me start at the beginning, 14 years ago I made the decision to come off medicine I took as a child Ritalin and Zoloft.  Almost 6months later while I was working two full time jobs I started noticing unexplained-able things happening.  My eyes would close, or i'd lose the ability to stand when I laughed.  I learned to deal with it because it only happened sometimes and wasn't and everyday occurrence this started winter of 2003.  As the years went on around 2008 it got to a point where i'd literally fall down when I laughed.  It got to a point in 2013-2016 that I felt it almost everyday.  There were even times I feared i'd lose the ability to function in a normal life.  I would go to Walmart and just walking from the car to the front door i'd have an episode luckily my sister or friends would lock there arm in mine and say breath, come on walk.  But they ended up pulling me because my legs locked and I couldn't move right there in the path of cars.  I couldn't play with the kids tossing a ball around because when it came my turn to catch i couldn't move my arms, or when we sat in the pool id fall face forward and the kids had to come to my aid rolling me onto my back because I was under water.  These are just some of the things.

I started seeking therapy thinking it had something to do with my medication I stopped taking so many years ago.  But everyone said it was all in my head.  I was referred to a Specialist a Neurologist and he ran many pointless test that wouldn't show an episode as I called them.  Even with showing him a video or an episode he said it was all in my head and to learn to avoid things that trigger it.  Nobody was listening to me.  All I knew was something wasn't right and it all started the year I stopped taking my meds I was given consent by my Therapist I had as a child.  So I went on living life wondering how far things would get before I could no longer work, drive, or enjoy anything in life.  I would have episodes from watching tv, playing, being physical active, or just joking around.  So I kept seeking therapy hoping that maybe i'd find just one person who listen and believed me.

I started going to college and I was encouraged to see the therapist on campus so I did and that was the first time anyone even listens and tried to help me get a MD DR to listen and be open to something going on.  It took me taking a friend to a free clinic than deciding i'd give it a shot to see if they could help.  I showed the DR the video I showed the Neurologist and told her some things and right away she knew what it was.  Gave me a name called everyone there into the room because she said it was very uncommon and told me to have a sleep test.  So I saw a sleep DR in June 2017 and a test was set up for mid July and I was given the results the following week.  Turns out all these years all these struggles is simply Narcolepsy and Catalepsy.  Yea I have a name and a cause now I can understand why things happen the way they do.  Turns out my old medicine was also use to treat the symptoms so there no way of knowing when it started or how long I had both.

Such a relief to know.  Yes, there medicines I can take to try and maintain symptoms but there expensive your talking 5pills alone cost $200.  But at least now I know what is happening and can explain it to others rather than just say something wrong but IDK what.

WHAT IS NARCOLEPSY?

It is often assumed that it means people just randomly fall asleep, but that is furthest from the truth yes, some people do just fall asleep.  But it really your body not recognizing that you were ever asleep so it tells your body it needs it and makes it fall asleep.

Definition : Narcolepsy is a chronic sleep disorder characterized by overwhelming daytime drowsiness and sudden attacks of sleep. People with narcolepsy often find it difficult to stay awake for long periods of time, regardless of the circumstances. Narcolepsy can cause serious disruptions in your daily routine.

Sometimes, narcolepsy can be accompanied by a sudden loss of muscle tone (cataplexy) that leads to weakness and loss of muscle control. Cataplexy is often triggered by a strong emotion, most commonly laughter.

Narcolepsy is a chronic condition for which there's no cure. However, medications and lifestyle changes can help you manage the symptoms. Support from others — family, friends, employer, teachers — can help you cope with narcolepsy.

WHAT IS CATAPLEXY?

Sudden loss of muscle tone. This condition, called cataplexy (KAT-uh-plek-see), can cause a number of physical changes, from slurred speech to complete weakness of most muscles, and may last for a few seconds to a few minutes.

Cataplexy is uncontrollable and is triggered by intense emotions, usually positive ones such as laughter or excitement, but sometimes fear, surprise or anger. For example, your head may droop uncontrollably or your knees may suddenly buckle when you laugh.

Some people with narcolepsy experience only one or two episodes of cataplexy a year, while others have numerous episodes daily. Not everyone with narcolepsy experiences cataplexy.

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If you would like to read more about Narcolepsy and Catalepxy  here is a link that has alot of information of both, symptoms and other facts.

http://www.mayoclinic.org/diseases-conditions/narcolepsy/basics/definition/con-20027429

Leo and Max Across America

So I meet an amazing person Leo Dever about 5years ago walking a bike on the side of the road.  He was heading somewhere but no where particular.  He had one goal just telling people that animals lives matter too.  I got to know him and now help maintain his accounts and keep his family in touch with him.  He is now 62years old and has been riding his bike cross country for just about 12years now.  SassyMax has been riding with him for the past 8 years.  What an amazing duo they make.  He just started off on his third bike.  He been to all the states, and still going strong.  Remember to share the roads and not be greedy to those on the shoulders.

Find Leo and Max on facebook at:    https://www.facebook.com/SassyMaxandLeo/

Feeling Alone and Abandon

Sometimes I find myself feeling like nobody is in my corner and i'm all alone.  All though in some deep hole I know that is far from true on the surface its reality.  I really don't know or understand why I feel this way. Sometimes I think its because so much goes on and there no answer as to why its happening.  Maybe, I just got so use to growing up as a kid that now that I'm an adult and everything changes from how it use to be.

People move away others make new friends and no longer feeling like I belong or fit in.

College English The Struggle is Real

So now that i'm half way though my third semester.  The caution of where your grade lies.  As the final day drawls near on dropping classes that your doing poor in you wonder if you should or should try to stay and succeed.

English has always been my hard area.  Though I love reading, and writting its also been my downfall.  I have A in all the small projects its when it comes to spelling, or paper writting that the F come from.  I've come to realize these last few semesters that after 2-4revisions i jump from an F to a C/B/ and sometimes even an A paper.

Allthough I hope to pass with at least a C I started to notice its going to be a struggle.  I'm sitting very low.  And only being allowed one revision per paper.  I am relying on many friends to help me with my grammer and spelling.  As of right now I am keeping the positive that I can do this. I can make it the last few weeks of class and keep a positive grade.

Here at Ozark Technical Community College (OTC) the teachers have gone above and beyond to help me be successful.  They started this program where you take English 050/101 together or English 101/102 together one supporting the other.  So I did ENG 050/101 to get the added support.  The idea is you go to ENG 101 first for just over an hour you take a 20-30min break than go into ENG 050 to reveiew the previous class and get a jump start on the next ENG 101 class day.  If I had not taken this program I am sure regaurdless if I took ENG 050 or 101 by there self I most likely would have failed.  Now i'm trying ENG 102 and struggling even more than the other. But I don't have the previous class to help.

When it comes to English i'm farther behind than most people coming out of High School. Why? because I was in special education rooms and rather than teaching me the same english that everyone else was learning they prevented me from advancing.  I feel that i've had to teach myself and grow though the things I do in life.  They say you can't do college with anything lower than a 9th grade reading and comperhension level.  Well my reading is at 8th grade and i'm determined to define that you can.

I am 33 years old I started back to college when I was 32 years old.  My first paper was in History it took two grades and three writting of the paper but I went from an F to a B.  In my English 050/101 I averaged about 3-4visits to the teacher for revision.  This semester in Eng 102 I am only allowed 1rewrite  I hope it will be enough to make a big enough difference.I am hoping in two years I will be able to Post the joys of Graduation.

Finding Answers

So those who have followed me so far.  Understands my struggle.  Here my update.

Leading To Results......
I took a friend to a free clinic today and decided with how they helped him maybe they could give me answers.  So I found a video of an episode I have to show them.  And I told them when things started many things I've been told they were and that I wanted help finding answers.  I turned the video on and showed the nurse than the Dr and instantly the Dr had a name.  CATAPLEXY AND NARCOLEPSY.  Wow I have a name to 13years of being told it's in my head.   It's amazing how someone from a free clinic cared more.  So she brought everyone in to see my video.  I guess it's rare I mean think about it 1:2000 have Narcalepsy and 70% of those have Cataplexy.  It so rare that kids with ADHD are treated with the same medications to treat both conditions. So alot of times what happenes is that one never knows until they stop taking it.

My Fears.......
Going to that clinic was a mix of emotions.  Trust and believe I am very much relieved that I know what I have. Yet, it only raises more questions. How do I get back on meds? Will my life be overturned now that there is a name? Will I become dependant on others because i'll lose my license?  Nobody can answer these its a wait and see game.  13years of concern on being brought to a point where you couldn't function anymore and become dependant on everyone else.  Now to learn that to get the help one needs everything you fought for you may not beable to do anymore.  How does one tell there work or school this is something new you need to accomodate.  Yet if you live to far you half to drive but if I lose my license than your SOL anyways.  Quit school Quit work pick one over the other.

Definitions.....
So what exactly is Cataplexy is a sudden and transient episode of muscle weakness acoompanied by full conscious awareness, typically triggered by emotions such as laughing crying, or terror. It is the cardinal sympton of narcolepsy with cataplexy affecting roughly 70% of people who have narcolepsy, and is caused by an autoimmune destruction of neurotransmitter hypocetin (also called orexin).  Which regulates arousal and wakefulness.  Cataplexy without without narcolepsy is rare and the cause is unknown. (Wikipedia)

So what is Narcolepsy  is a long-term neurological disorder that involves a decreased ability to regulate sleep-wake cycles. Symptoms include periods of excessive daytime sleepiness that usually last from seconds to minutes and may occur at any time. About 70% of people also experience episodes of sudden loss of muscle strength, known as cataplexy. These spells can be brought on by strong emotions. Less commonly there may be inability to move or vivid hallucinations while falling asleep or waking up. People with narcolepsy tend to sleep about the same number of hours per day as people without, but the quality of sleep tends to be worse. (Wikipedia)

What is Orexin also called hypocretin, is a neuropeptide that regulates arousal, wakefulness, and appetite.^[1] The most common form of narcolepsy, in which the sufferer briefly loses muscle tone (cataplexy), is caused by a lack of orexin in the brain due to destruction of the cells that produce it. (Wikipedia)