Thoughts on Xyrem, narcolepsy, and improvments in life.

[curlnick15]

this is the uh, bottle of ghb (club drug used in xyrem, look it up, that shit kills people)

[DavesTreeFarm]

Most doctors have not heard of this and not all doctors can prescribe it. You need to see a sleep specialist anyway if you think you have narcolepsy. Don't be discouraged if you don't have insurance because Xyrem has a hardship program if you qualify. Elizabeth, it is a great sleep medication for recalcitrant insomnia and even fibromyalgia, however it is not approved for these indications and thus insurance will not pay for it. Just an FYI for everyone. Thanks for the video.

David

[MyUsagirl]

This was 2 years ago... are your results now as good as they were then?

[callieharlem]

@MyUsagirl Actually, yes they are. I keep meaning to make a new video and will try to get one up in the next month.

[purplesugarrush]

Thanks so much for sharing this and your other videos. You described exactly how it feels. Getting diagnosed five years ago and being prescribed Xyrem almost immediately are some of the best things that have happened in my life. (I know, it sounds crazy!) What you said about feeling so alert and like you could do anything after that first night on Xyrem is so much like I felt. I remember all the next day feeling like "Oh my god! THIS is what it feels like to actually be AWAKE!"

Thanks again!

[callieharlem]

@purplesugarrush You're welcome. I am glad you are doing well with it too.

[denisemch]

Just wanted to say thank you for your video diary on narcolepsy/cataplexy. I have learned a great deal from them. My daughter is 16. She was in a dirt bike accident at 14 and immediately started having sudden sleep attacks and cataplectic episodes. She wasn't officially diagnosed until a year later. She was pulled from school twice and homebound tutored. The doctor put her onto Xyrem and what a blessing it is! She wakes up in the morning with no help. Wonderful improvement.

[callieharlem]

@denisemch That is great! I am happy to hear she has had so much success too!

[ElizabethCorkins]

ive been lookin into this for sleep. its not a stimulant at all is it? cuz i cant handle any stimulants! or caffiene.

[callieharlem]

@ElizabethCorkins Do a little research, it is pretty much the exact opposite of a stimulant or you would not have to take it in bed!

[ElizabethCorkins]

@callieharlem yup i did, i gave my dr the start up package thing, they dont think its right for me right now though & thats ok.

[blkpuggirl]

try eating a saltine craker b4 ur 1st dose to help with the taste, also 4 the 1st does try using ice cold h2O not from tap but from fridge with ice are some suggestions...Hope still working 4 ya.! Have a blessed holiday.

[jayllandudno]

this isnt a joke btw but would amphetamine based meds help?

[callieharlem]

@jayllandudno Amphetamines were the drug of choice for a long time, however they have many serious side effects and are very often abused. Newer medications like Nuvigil are preferred.

[missb8609]

@jayllandudno Usually a last result if Xyrem doesn't work or if you can'r afford it.

[klyfly1]

son took rid for years for other stuff made no difference on the cats -eff made him crankey crankey did nothing for the cats-klop junk did nothing---tryed vy chest pains but before he had to stop taking it after a few days he stated so this is what it feels like to have a life--- waiting to try xyr -

[triggerhappygunnerm]

"No naps and no cataplexy attacks during the day" - I laughed of happyness. I wonder if I can get this in Norway, as I'm on the highest dose of Ritalin availible I'd like to test this out. Do you sleep "harder" during the night? I'm having these annoying episodes during the night where I am like..10% conscious during my dreams. Like.. afraid of waking up because I want the dream to continue and episodes where I can actually control my own dreams. I just want to.. sleep! Without waking up! :p

[callieharlem]

@triggerhappygunnerm I am really not sure if you can get it in Norway. My guess is no, as it is only made in one pharmacy in the united states, but let me know if I am wrong. It puts you into REM sleep, and I have to say that most nights I am out. I think it is wonderful to really sleep, even if I have to wake up to take the second dose. I almost never have dreams after starting the Xyrem, not sure if that is a common side effect or not.

[triggerhappygunnerm]

@callieharlem I think you're right on that. I'm going to call my doc today and check it out. But isn't it the REM sleep that is the most exhousting part of the sleep, hence the reason to why we get these random super need for sleep later on the day? And the part were we're dreaming? There's not really much help to get about narcolepsy, other than the internet. So excuse me if I got it all wrong :p 'Cause, it almost sounds like that the Xyrem knocks you into the common "narcoleptic sleep"? :p Or?

[RuinHD]

hmmm... just started my xyrem treatment last night. and i haven't noticed any changes yet. how long did it take for you to experience the effects?

[callieharlem]

@RuinHD Probably two weeks. If you have not noticed anything after two weeks I could call your doctor.

[Sws726]

I'm seeing my sleep specialist next week and we will be discussing Xyrem. I hope to have similar results. Waking up alert must be unbelievable. I haven't had a good night sleep since I was a kid.

[gizabeth672]

Hi Callie i watched your videos. I am 99% sure i have narcolepsy and cataplexy. I have had in the area of 75 cataplexy attacks. i have not worked or driven for 4 months until all of my testing is done. i have a sleep study on jan 15th and should know for sure jan 25th. i just hope i get diagnosed soon and get back to a normal life. i am a 48 yr old female. thanks for your information i am sure you have helped alot of people and am glad you are feeling well. good luck

[callieharlem]

What were the results of your lab?

[StormyNoMore]

I ran out of space.......from LaToyia- 3 God Bless you and keep me posted. I'm LaToyia and shoot you my email in a message. I was also in school and I could literally never finish reading my assignments. It sucked. School is something to look forward to with a drug that produces results. What are you going to school for?

[StormyNoMore]

I ran out of space., from LaToyia- 2......It's comforting that there others with this dibiitating disorder that are speaking out about the ineffectiveness of the constantly prescribed drugs and that are finding other options that actually produce strong results.

[StormyNoMore]

Thanks for the update. I am happy that you found something that actually works 100%! My husband wants me to look into the Xyrem as well. Right now, I'm breastfeeding and the doctor said there is nothing that I can take for the narcolepsy, but when I'm finished nursing, I want to get back on something else.

[missb8609]

bye bye cataplexy

[missb8609]

on Nuvigil, but I can't afford that right now so my doc prescribed ritalin. It doesn't really work... but then again you pay for what you get. I am very happy that Xyrem is working out for you! Take care!

[callieharlem]

I wanted to clarify that you cannot develop a tolerance for Xyrem. The reason you have to adjust your dose right now is because when you started on 2.25 your body was exhausted from years of poor sleep. As your body gets used to better sleep you have to increase the dose to simply fight the narcolepsy. 3 grams twice a night is what I am on and is a medium dose, you can continue to increase your dose with your doctors orders up to 4.5 twice a night.

[narcolepsyblog]

You know what. I will stick to the one dose tonight and maybe call them in the morning to confirm with him that that's what he wanted for me. I'd rather err on the side of caution and ask to start lower. The pharmacy didn't say anything to me about it, though. I actually have another friend I used to work with who also has narcolepsy - as you mentioned here- she never heard of Xyrem, so you are right that it's still new but hopefully it will get more popular.

[narcolepsyblog]

I ran out of comment space above, so here's part two. Feeling like a brand new person isn't trite - it's the truth with this. I was so super focused at work today for the first time in a long time, and my dark circles were lighter this morning. Physically and mentally, I felt a world of difference. I can't imagine what it will be like when I really get adjusted on on both nightly doses. Wish me luck.

[narcolepsyblog]

Thanks for the update. Great to find someone else who found this to be the answer, although I am also still supposed to take the Provigil until my next appt. in three months. As you commented on mine, my dose seems high. I didn't question him but hearing that others start lower makes me wonder why he chose this route. Today is the first day I take both doses. Did you start with both right away? Last night was the first night I woke up gasping for air- hope that goes away. It was terrifying.

[callieharlem]

I just don't think it was a safe choice to start on the highest dose. The company website does not suggest it either. The gasping for air is a bad sign though-you did the proper testing and had no sign of sleep apnea, so I am guessing the dose is shutting down your system too much. I would call your doctor and tell him about that. When I started it was 2.25 grams twice a night. I guess you start off there because at first you are so tired it works really well, then you adjust for control.