Living With Narcolepsy: 2 Years on Xyrem: Narcolepsy Warrior

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My goal with this video was to share my experience with narcolepsy and using Xyrem for the past 2 years. I would love to hear from you. Let me know if you would like me to speak about various subjects, like, day to day routines; specifics about what narcolepsy is; how we can expand awareness of narcolepsy and encourage more research into this little known condition; etc.
Find an accredited sleep center near you: sleepeducation....
I’m not a doctor. I’m a girl living with an incurable sleep disorder, narcolepsy with cataplexy, sharing my personal experiences with the hope & intention of spreading awareness about the severe impact sleep disorders, and sleep deprivation in general, has on the quality of our lives. Above all, I'm here solely to support you, my fellow sleepy peeps. If it wasn't for you, I wouldn't be doing any of this. You are my inspiration. Whether you're battling insomnia, excessive daytime sleepiness (EDS), chronic fatigue, sleep paralysis, hypnagogic hallucinations, sleep apnea, restless leg syndrome (RLS), shift work sleep disorder (SWSD), delayed sleep phase syndrome (DSPS) or even jet lag, I'm here to help educate and enlighten. Any tips I share are done only after I’ve tried something myself. I don’t make 3rd party recommendations. I'm a big proponent fo sleep studies. Sleep issues are oftentimes the last thing considered in current, modern medicine. Take the reins with your healthcare. You're your best own advocate.I always encourage you to contact your physician before following my advice, or anyone else’s for that matter. Take care of yourself and remember, even when you feel really alone, I'm here to remind you that you absolutely have company. Sweet dreams my sleepy peeps!
#xyrem #narcolepsy #therealsleepygirl

Опубликовано:

5 окт 2024

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Комментарии : 43

@BeeBopGaming 7 лет назад

Nice idea and info. Last night was my first night taking xyrem for my N. woke up feeling awake for the first time that I can remember.

@narcolepsywarrior 7 лет назад

Welcome to the world of Xyrem! I'm glad the video was helpful. I think I had the same reaction after my first day. I remember waking up and getting out of bed without the normal repeated snooze button pushes and falling back asleep 10x before finally dragging myself out of bed. Like I said, I'm really happy with it. I have some more topics I want to talk about so I'll be posting again soon. Thank you +beebop shopbop!

@BeeBopGaming 7 лет назад

Narcolepsy Warrior I may start doing videos also. I also suffer from Chronic Migraines and it get 1-4 of them a day. It's ruined my life along with narcolepsy and I suffer through work just to get home and be off on weekends so I can suffer at home. Been to so many docs and I think doing videos might help talk and get frustrations out and maybe help someone that may be going through something similar. It's so hard to keep going with the pain and sleepyness. Anyway I hope I do them. I'm shy so idk

@BeeBopGaming 7 лет назад

Narcolepsy Warrior I also noticed the 2.5 both times a night it takes about 30-45 mins to kick in and then I wake up 3 hours later on both. They are upping my dose on the 8th day of treatment to 3mg twice a night. Hopefully that works

@narcolepsywarrior 7 лет назад

I have had the same issues with not falling asleep right away. At one point, it was because I was using a bottle of Xyrem that was 6 months old. It does lose it's potency. I don't think that's your issue since you just started. It took me forever to get up to the max desired dose of 9g. At least that's my doctor's goal for me. You may be able to get there faster. Which means you'll be feeling rested faster. Yay! Right now I take 3.5g, wake up 3 hours later, take 3.5g, wake up 3 hours later and then my last dose is 2g and i wake up 2 hours later. So I'm averaging 1 hour of sleep for every gram I take.

@narcolepsywarrior 7 лет назад

I completely support you doing videos. I'm of the mindset that if you help one person, you've done your job. And if you help just one person, in turn, you help yourself. I can understand the shyness. I found that once I turned the video on and just started talking, it all came out naturally. Give it a shot. If you hate it you can always delete it! Only you and your phone will ever know it happened! :)

@discoverydavid 6 лет назад

I'm trying really hard not to start this with the first person..Doh! Me, myself and the unspeakable have just been diagnosed at 49 with Narcolepsy and Cataplexy with ADD so...jinx, snap, Mazel-tov! I diagnosed myself as Narcoleptic 10 years before any doctor because the Cataplexy is such a give-away. My message to anyone who suspects but is in doubt is to stick to your guns and don't let the doctors bully you...instincts are very often correct.

@bodionafun3441 4 года назад

You already answered my question to HeyHannah some years ago. Thank you.

@bodionafun3441 4 года назад

Thanks for sharing your experience with Xyrem. Can I ask, Would you be able to wake from Xyrem induced sleep and act effectively in the event of an emergency? This has always put me off trying Xyrem as I live alone. I'm really desperate now though, I've been taking dexamfetamine for twenty years and my brain is fried. Thanks and good luck to you. Xx

@lindseyelizabeth2281 6 лет назад

Ive been diagnosed with narcolepsy and hate adderal and meds like that. Ive never heard of xyrem but it sounds great. Im just scared of meds that make me feel funny

@darryljohnson6664 7 лет назад

Very nice video. I was just diagnosed last year, later in life. Really having a time excepting this diagnose. Feeling alone. 3 REM on MSLT. Could it be wrong?

@Copainization 7 лет назад

Sorry for the loss of explorers like Dr. Gleason and less sorry for FDA silliness.

@hannahdivic28 7 лет назад

Thanks for this video! I first tried Provigil which didn't work at all, so I'm currently on Adderall but my doctor seems to be pushing Xyrem on me thinking it would really work. It's great to hear your opinion, I'm still conflicted about whether I should try Xyrem or not. From the limited amount of success stories out there haha it sounds like it works for most people, but I also can't stand the taste of saltwater lol. It sounds like from your description of your personal diagnosis that we have really similar symptoms, so I might consider trying Xyrem. I just hate the thought of being fully unconscious and unable to do anything in case of an emergency or something. I'd love to hear what you think about your concerns about Xyrem in terms of being "knocked out" haha and if it scared you or if it was okay. I'm also in college so even though I try to keep a consistent sleep schedule it is difficult, so Xyrem being a depressant drug kind of makes me nervous that I might sleep through morning classes or stay up too late studying that I would miss a dose. Please if you can I'd love to hear your thoughts also about missing doses and if you ever felt side effects or if the positive weighs out the negative. Thanks! I love your positivity :)

@narcolepsywarrior 7 лет назад

Oh good! Thank you for saying that about the issue of sleeping too deep that you miss things, like fire alarms, classes, etc. I can definitely speak to that. I had the EXACT SAME reservations! I was worried that if there was a fire or someone broke into my house or attacked me, that I would be too paralyzed to do anything. I voiced the concerns to my doctor who didn't 100% quell my fears but I will do that for you! I will post a video on that later today or tomorrow (otherwise I'd type it all out here LOL). In the interim, don't worry about emergencies. You'll be able to handle them. Xyrem doesn't paralyze you, you still have control. You can still be woken up. Thank you for voicing this concern. It definitely was something I wanted an answer to when I was diagnosed!

@narcolepsywarrior 7 лет назад

Hannah- I just posted a video about some of the issues/fears you expressed. You can see it here...ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-YSqR1oXKCg0.html

@hannahdivic28 7 лет назад

Narcolepsy Warrior thanks! :)

@daviddesantiago1793 6 лет назад

HeyHannah im no provigil it doesnt work :(

@davenmac732 7 лет назад

my doctor just prescribed it to me,i think i’m afraid to take it though

@justinsaeger181 7 лет назад

Thanks for the helpful video! I'm on 4.5 grams twice a night and I can't sleep more that 5-6 hours. Sometimes 4 hours a night. I felt truly sleep deprived, more than I did before I started the medicine. I see my doctor Friday but I think maybe the dosage is too high? I'm not really sure. What is your dosage?

@narcolepsywarrior 7 лет назад

Hi Justin! I take 3.5g at bedtime and wake up 3 hours later, I then take another 3.5g, sleep 3 hours and then my last dose is 2g and I wake up 2 hours later. I'm averaging an hour per gram. I like the 3 doses. I do notice the side effects are minimized a bit since the last dose is lower. My doctor is wiling to get creative with the timing and amounts of the doses. Hopefully yours is up for changing things until it works for you. Are you just starting out on Xyrem? Are you splitting the 3.5g into 2 doses? I wouldn't be surprised if your doctor increases your amounts.

@justinsaeger181 7 лет назад

Narcolepsy Warrior Oh okay neat! I've never heard of that. I'll have to ask him. I've been on xyrem for almost 6 months. I was originally on 3.75 grams twice a night and it worked great! The only problem I had with it was it took me almost an hour to fall asleep, so I wanted to try the 4.5 grams twice a night. I also crashed around 4 o'clock with the 3.75 grams twice a night. I feel like the 9 grams total is too much but maybe it's just the timing of it like with what you do. Do you set an alarm for all three of those doses? How did you do on the 3.75 and 3.0 grams?

@narcolepsywarrior 7 лет назад

I only set alarms for those doses if I have an appointment in the morning where I must get up at a particular time. Otherwise, I go without. I'm waking up right at or before the alarms anyway so it's pretty consistent with me. You mentioned things were great with the 3.75g 2x per night but that it took and hour to fall asleep. I have 2 bad habits that cause me to not fall asleep right away. 1. I eat something in the 2 hour window before I go to bed. or 2. I play with my phone. Also, alcohol will affect your success. So, no alcohol or food before bed and no phone fiddling in the bedroom. See if that doesn't help. Also, I run a fan in my room and oftentimes wear ear plugs. I'm very sensitive to the sounds outside, cars driving by, voices on the sidewalk. Even though they may not be loud, I sleep like a BABY with the fan and/or ear plugs. If you don't want a fan or ear plugs, stream some meditation/spa music. Create a sanctuary for the beautiful sleep your body wants so badly.

@justinsaeger181 7 лет назад

Oh okay good! I hope I can get like that. Yeah that's true, I shouldn't play on my phone before I go to bed. I don't drink and I don't eat 3-4 hours before my bedtime. So I'll try not being on my phone. I might try a white noise machine too. Thank you so much for the advice!

@narcolepsywarrior 7 лет назад

I LOVE the white noise app called Relax Melodies. www.ipnossoft.com/app/relax-melodies/ You can create a custom arrangement. And it's FREE!

@karadiana7667 7 лет назад

I have had horrible luck with different stimulants. I have anxiety and the meds intensify that as well as agitation. More so when they are wearing off. My dr is also talking about Zyrem but this anxiety effect really deters me.

@narcolepsywarrior 7 лет назад

Hi KaraDiana, I can identify with the amplified anxiety issue with stimulants. I do have a recent confession...I will post a video soon on what why and how but I've reduced my Xyrem dosing and had to supplement with Nuvigil. Do I still hate stimulants? You betcha. But, I couldn't deal with the Xyrem anxiety anymore.I had to back off. I do find that if I take small, incremental doses of Nuvigil, WITH FOOD, I have a much better day.

@brianm8611 7 лет назад

Thanks for the informative video. I tried Xyrem for a few months a couple years ago but ultimately discontinued use due to the intense anxiety it fostered. I've been on Nuvigil since then, which certainly helps, but I'm still not where I'd like to be in terms of EDS. I recently received another prescription for Xyrem, but am a bit reluctant to go down that road again. When did the anxiety become an issue for you? How/when did you modify your dosing?

@lisanoto1222 6 лет назад

I'm on 2 20mgs of Ritalin whatever the highest dose of nuvigil is during the day then at night 2 amitriptyline a mg up from the lowest mg sorry not around my meds right now then the two doses of xyrem at 4.5 ive noticed the cataplexy is worse at night when under high stress I literally thought someone was breaking into my apartment last night and at times I feel hopeless my life has done a complete 360 degree turn in the matter of one sleep study and am having a really hard time coping along with a boyfriend who doesn't really care and thinks its all a joke and made up in my head not real and being upset from it triggers the cataplexy a lot 2 to 3 times a week I've tried to explain I've tried to get him to watch these videos to try and educate him and its just not going anywhere I guess I'm just venting I'm sorry but its frustrating when someone you love so much can be such a trigger to your condition

@Chuu266 4 года назад

I hope you have dumped that guy by now!

@JourneywithBB89 6 лет назад

What kind of diet are you on?

@mitchellnorton5765 4 года назад

hi so i tell some ppl about my condition and that i take adderal and xyrem and i tell ppl what they do for me and ppl tell me that i dont need these drugs anf that theyre bad for me can someone help me with a response to ppl that day this to me

@narcolepsywarrior 4 года назад

My apologies for the super delayed reply. This is an EXCELLENT question. I've had the same exact, ongoing issue with a close friend. This is my take on it. In general, if I think the other person lacks the capacity to care deeply about others (empathy) I just stop sharing personal things with them. Whether their hearts are in a good place or not, I simply don't share with those who haven't walked in my shoes. Of course, this may sound like I'm a hypocrite since part of why I have this channel is to spread awareness. However, some people have the capacity to listen, care and learn and some don't. I've had to reevaluate some of my relationships since my diagnosis. It's all been a good thing. I hope this helps and makes sense.

@brandi_whine 4 года назад

Are you still on it? What side effects do you have?

@narcolepsywarrior 4 года назад

Sorry for taking so long to reply to you Brandi. I'm actually not currently taking Xyrem. Not to say I won't again in the future but I eventually couldn't take the debilitating side effects.

@brandi_whine 4 года назад

The Real Sleepy Girl no worries! Glad to hear you say that actually since thats why I wont