Narcolepsy with Cataplexy

nololtoday's views on narcolepsy with cataplexy

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• nololtoday

[bubbachee]

I have the terrible 2 and you tell it so well. Would love to chat. I'm from Sydney Australia and I still drive and work and would love to see if I could help. I can also beat an attack......,.,..,. Rarely but it cam be done. It feels like trying to move a house to move a muscle but it can be done. bluewaterhuntingbear@live.com is my email. Hope to hear from you. That's one attack I can predict and look forward too. Cheers bear

[nololtoday]

@bubbachee

I'm honestly not much for chat. Messaging a little here on Youtube is fine with me, though. I do understand what you mean by "beating" an attack. My resistance is fairly high - meaning I can balance my response to a trigger to keep some modicum of control ... but there are times where the burn and fatigue are just too much. My cataplexy has intensified over the years, too. Very perceptibly. 

[iBJaz]

I haven't been given meds yet. I was diagnosed this year in July. I've had symptoms of narcolepsy and cataplexy since I was ten. I'm 22 now, will be 23 in January. I tried to get medicaid once I was diagnosed but they said it was a disability case. I was denied twice and now I have to go before the judge to see if I get approval but I have to wait 18 months for that. I don't have enough money to pay for meds. I haven't been able to work. I've fallen asleep in job interviews..on phone & in person

[JayNhuyenCooking]

Thanks a lot for the video, it allowed me to relate to somebody with these things I couldn't answer before.

[nololtoday]

@DavesTreeFarm

Yes, using EEG. I was mostly using it to help sustain consciousness. I saw a positive trend over time. When seated trying to remain focused on the audio/visual stimuli I had progressively quicker drops in delta waves. At a time where I was trying to recover from bad responses to medication it was the most gentle avenue.

[DavesTreeFarm]

@nololtoday

That's interesting. Are you talking about neurobiofeedback (using EEG)? There are some docs in my community using this but I can't seem to find any credible literature (studies) on the subject. I have not heard of this being used for cataplexy, but perhaps I should look into this more.

[nololtoday]

@DavesTreeFarm

Definite bummer that I react badly to the meds that cut the cataplexy, but I'm glad the Klonopin is working, too! I haven't had nearly the drop off in effectiveness that I've had with other treatments, either. The only other thing I can say that I've seen results sans side effects with is biofeedback, but even that occasionally triggers migraine storms.

If it wasn't for the cataplexy I'd be a much more functional person.

[DavesTreeFarm]

@nololtoday

Sorry to hear about that. Unfortunately Klonopin doesn't affect cataplexy. This may not be too bad for some, since cataplexy is not an all-or-none phenomenon. Most narcoleptics have some degree of cataplexy or even none. In the world of sleep medicine, Klonopin is the benzo of choice for many disorders like REM behavior disorder, sleep maintenance insomnia, or even periodic limb movement disorder. It just seems to work much better than others. I'm glad its working for you.

[nololtoday]

@aceshigh8881

No. I feel bad for people if they seem to have narcolepsy like symptoms related to immunizations, but as far as I can tell it's a familial/genetic trait I have inherited.

[nololtoday]

@lillbaby7

Glad you were able to find some empathy on the matter. It really is impossible to describe the experience of having narcolepsy in any concise manner, so it isn't something you can simply summarize for someone else and have them understand. Eventually, though, when you have come to understand enough about it yourself you'll meet new people who you can inform and they will know you and what you deal with. It's the relationships from before diagnosis that give rise to frustration ...

[nololtoday]

@AMBERSINGSS16

That's awful. If it's any consolation to him I've fallen asleep mid sentence talking to my grandma & she's 80.

[nololtoday]

@DavesTreeFarm

My experience with Xyrem hasn't been positive. I found I had some packed away recently and tried it. It just feels toxic. Same as before - as if my body has a hard time eliminating it (I started having a lot of side effects last time & don't want to push it.). I've actually had some success with Klonopin. I never anticipated a benzo would benefit me, but it certainly has.

[DavesTreeFarm]

You did a wonderful job explaining this disease. I hope Xyrem works for you. The great thing about Xyrem is that it will control cataplexy long after the drug is eliminated from the body. We don't know why. I run a sleep evaluation center and can tell you that only about 50-60% of people tolerate the drug; but, when it works it is life-changing. Good luck.

David

[AMBERSINGSS16]

My grandpa has exactly what you have. He hates it. He'll be in the middle of a conversation And if he feels any emotion he will just fall asleep for like a minute. He can't drive because he's already gotten into 2 wrecks.

[lillbaby7]

I am only 18, and was diagnosed a year and 3 months ago with severe Narcolepsy and Cataplexy. It is hard every day to deal with, but I try to bring more positive feelings into my life to help me fight it. A lot of times, I dont feel like anyone does or could understand what it feels like to have different "episodes" occur, but seeing this video made me feel less alone.

[aceshigh8881]

CURIOUS....Did your condition appear around or shortly after any type of immunization? If so please let me know asap. Thanks.

[jessicakeysrobertson]

oh my goodness I can so relate! fellow narc. I do the not being able to find the awesome word I just had thing ALLLLLLL THE TIME. lol really annoying. enjoyed hearing your story!! version 2.0 is on my playlist somewhere as well.

[yayie1]

Thank you... Not even the doctors I have been to have been able to explain it as you have in this video. Thank you...I also pray that there is a cure or something to help Cataplexy.... Because I have it and I too am supper sensitive and defensive about it.

[kimgattuso]

thank you for this

[BrittLovesGlam]

U have this to I cant take a nap purring the day or i get catalepsy bad.

[00belief00]

HOT !!

[zimago]

Did you mean Disorienting?

Thank you for an incredibly enlightening video.

[nololtoday]

@IIxIIxArchAngelIIxII

Augh! Losing touch with reality! I've been having major problems with this off & on. A bit more as of late. I made it to my bedroom door this morning while still believing the hallucination I was having. It was like I opened up the door to reality & snapped out of it. It genuinely frightens me.