😴Narcolepsy with Cataplexy🤕 - Understanding the condition 🩺
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- čas přidán 20. 07. 2024
- Narcolepsy with Cataplexy - Table of Contents
What is the Condition? (1:52)
What are the Symptoms? (4:09)
What are the Triggers? (7:09)
How is it Diagnosed? (8:28)
What are the treatments? (11:38)
What Doctors can help? (16:47)
How does this effect my caretaker? (17:01)
What misconceptions do you deal with ? (18:21)
Expand your Knowledge - Helpful Information
www.mayoclinic.org/diseases-c...
www.morethantired.com/what-is...
knownarcolepsy.com/impact-of-...
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When I have a cataplexy attack I have difficulty breathing. Has anybody experienced that?
Jenise and Paul thank you so much for making this video. The moment the video was over I shared this with my 21 year old daughter. Yesterday I took her to a specialist and they think she has narcolepsy so she's having the testing done. This video made me understand my daughters sleep problems a lot better thank you again.
I've only just stumbled upon this series, but I really appreciate it ♡ I was diagnosed with chronic migraine years ago, but over the last 2 years I've been diagnosed with PCOS, narcolepsy type 2, and POTS. And just seeing these videos from people who have experience with these illnesses just really helped me feel a little less alone. Thank you both! L
Thank you for sharing. This has helped me better understand my sleep disorder and symptoms.
I just wanna say thank you for making this video cuz through out the years I would experience the weakness in my legs, which made me feel like I was gonna faint but I regained control this would only happen if I would laugh or if i get too excited but now Ik what I have
So glad to see your videos. I was so sad to hear about your computer frustration. I can totally relate. Sending you good vibes your way ☺️
Thank you so much for the love and support💚👍🤗💚
Thank you so much for sharing.
Thank you so much for watching👍🤗💚
Sitting here with wax glue still in my hair & contact dermatitis from the electrode gel / tape adhesive while watching my favorite CZcamsrs...🥳 💚 Thanks Janiece & Paul!
Are there muscle twitches with the cataplexy? Like facial tics with the sudden arm and face drop?
I learned I had narcolepsy in high school and I had automatic driving episodes that I couldn't remember chunks of almost daily. I didn't develop cataplexy (or it wasn't strong enough to notice yet) until I was about 23. The narcolepsy is triggered by stress and the cataplexy is triggered by excitement. It primarily affects my legs and I lose my balance but it comes back fast enough that I catch myself before I hit the floor. It's a habit now to stay by a wall or furniture in case I fall
It’s nice to meet another with Narcolepsy too 💖
This series is very informative
Thank you so much for watching all of the series.
We greatly appreciate the love and support 💚🤗👍
I’m narcolepsy and cataplexy when it strutted it was terrible at first and then I’ve learned to breathe and let go when it’s happening… All the symptoms including muscle spasms so badly that my face jumps on one side… I no longer expressed much emotions…
If you don't mind me asking do you know of any assistance to get a service dog? I have narcolepsy with cataplexy and the cataplexy affects my entire body and depending on what position I fall when I have a cataplexy attack I can't breathe.
I just had a sleep study done not too long ago because I was getting up at night and falling. I hit my head to the point where I had a bleed I've broken my wrist and I broke my little finger all from falling at night. What I think I was doing is when I got up I fell asleep and just went down. I ended up having central sleep apnea which is different from the obstructive sleep apnea. Now I'm having trouble with the machine that's supposed to help me it pushes way too much air into my stomach which makes me very bloated for days. I'm waiting now for them to come in to adjust my machine. I feel for you Janiece.....
Wow I'm sorry that you been injured so many times from this.
I also hope they can adjust your machine so it works perfectly for you💚🤗
Thanks for sharing. This was really informational! I’ve wondered how narcolepsy w/ cataplexy differs. That’s really interesting how strong emotions trigger cataplexy. It’s a bummer that you have to be pretty cautious, but I’m glad you have Orion (& Paul) to help you!
I’ve struggled with excessive daytime sleepiness that makes it very difficult for me to drive to/from work. After a nighttime sleep study & daytime sleep latency test (which was brutal bc I was soooo tired!), I was diagnosed with idiopathic hypersomnia (excessive sleepiness without a known cause). My life drastically improved by starting Provigil, but now on Nuvigil.
Did you experience any episodes during your wedding (since you were in a happy place)?
No because back then I didn't display the symptoms to the degree that I do now.
I've been diagnosed with narcolepsy, sleep paralysis and pseudo seizures.. I'm starting to think if I have cataplexy
hi i also advocate for diabilities
i also suffer from invisible disabilties Here are My diagnoses cut and dry i know that everyone with these conditions is affected differently and most of them are invisible: epilepsy, sensory processing disorder, Aspergers like behavior, low gross and fine motor tone,
A definition of each chronic condition
Epilepsy is a chronic disorder, the hallmark of which is recurrent, unprovoked seizures . A person is diagnosed with epilepsy if they have two unprovoked seizures (or one unprovoked seizure with the likelihood of more) that were not caused by some known and reversible medical condition like alcohol withdrawal or extremely low blood sugar.
Sensory processing disorder is a condition in which the brain has trouble receiving and responding to information that comes in through the senses.
fine motor skills to make small movements. These movements come so naturally to most people that we usually don’t think about them. Fine motor skills are complex, however. They involve the coordinated efforts of the brain and muscles, and they’re built on the gross motor skills that allow us to make bigger movements.
Asperger syndrome (AS), also known as Asperger's, is a developmental disorder characterized by significant difficulties in social interaction and nonverbal communication, along with restricted and repetitive patterns of behavior and interests.
Does medicinal cannabis make your cataplexy better or worse? Later on in the video..... YAY IT HELPS ME A TON TOO!
P.S. I followed your sis's cataplexy and narcolepsy journey too it helped me feel less alone when she said you had it too and I was like 😃 I'm not alone with these thing.
I'm glad you get some help from the Medical Cannabis!
You are definitely not alone in this journey!
Keep Moving Forward💚🤗💚
I thought Jaquie had it with cataplexy and you without. I remember you and her talking about the difference between you two. Yikes..
So it was thought I didn't but after further investigation and more sleep studies it was determined I do have it with cataplexy.
I didn't know you had narcolepsy! I have narcolepsy & cataplexy. My youtube for that is "Tired as A Mother" and my instagram is narcoleptic_motherhood
I guess a great example of automatic Behavior which I think is funny for myself is when I I was trying to make my boyfriend a sandwich for work the next day ate half of it and put the other half inside of the utensil drawer, of course it could have been something more dangerous that I was doing though.
That's actually really funny lol
Ofcourse it can be simple things sometimes, hopefully they stay simple and don't become dangerous👍
17:35 You're that naughty, are you? :-)