Thought for the day…
Thought for the day…
Thought for the day…
Thanks everyone for writing back with their experiences. I can understand a feeling of artificial wakefulness is not the same as the real thing, but I need some assistance with staying up throughout the day.
The sleep doctor and the psychiatrist put their heads together and I’m on Vyvanse now. They thought about Sunosi but it is just too expensive. Even fellow brand name drug Vyvanse is much cheaper. It has restored A LOT of my life, but it still is lacking in some area.
For example, because it is long acting and less prone to abuse it takes a LONG time to kick in, about 60-90 minutes. So it is of no use to me in the morning when I suffer from bad sleep inertia. Driving to work is still a chore and I have to concentrate very hard. Driving home is just as bad — the medication has worn off by then and I can’t take another dose because it lasts just too long but just not long enough. I can’t take more or else I will not be able to sleep late into the night, but I can’t take it earlier or it won’t last long enough. It is supposed to last about 12 hours, but really lasts about 6. This came to a head one night because I am a front office manager in a hotel and have a bellman who drives shuttles for event guests. He was sick one day and I had to drive the shuttle late at night (10:30PM-12AM) on short notice. I was wishing I had something short acting and short lasting to take but I did not. I ended up drinking coffee, and what a mistake that was. Coffee is a terrible stimulant — totally indiscriminate, just made me feel buzzed, wired, and sick, and then had a terrible crash. I avoid all caffeine at all times if I can (other than a small amount of diet cola with lunch sometimes). But I didn’t crash the shuttle, so that was good. The psychiatrist prefers long acting formulations because he thinks they deter abuse (though I have no history of abusing any drugs of any kind) whereas the sleep doctor is more flexible.
The sleep doctor has brought up Xyrem with the understanding that use in IH is really anecdotal. However since one of my most severe and disabling symptoms is sleep inertia, I would be curious just to see if it helps me with that. It’s SO hard to wake up in the morning and that period before the Vyvanse kicks in is just so hard not to fall back asleep. If I can find something that really helps me feel rested when I wake up…oh…that would be perfect, and something I would be more than willing to muster up the energy to fight with insurance about.
LOL. Well, how about this for a timely article… Sleep Divorce…
Okay, I’m old but, honestly, is there something wrong with sleeping in another room? It doesn’t mean you don’t get together for extra curricular activities but? Your sleep is precious. So is your girlfriend’s. My hubby snored like a chainsaw and I always slept in another room for over thirty years but we still had a great sex life. Yeah, sorry, too much information.
There are a million suggestions for stopping snoring if you google… even tying a tennis ball around your body that puts the tennis ball in the middle of your back… but that may be disruptive to your sleep as well.
However, I would bring up this nasty side effect with your sleep Doctor and see what his/her suggestion is.
Good luck to you both!
Hi, so I have never been a person that snores in my life and have never been diagnosed with sleep apnea. I have started on Xyrem somewhat recently and despite the growing pains of titrating up to the right dosage, I have been starting to see some positive results. Now I have started snoring pretty moderately. My entire life I’ve always slept on my side but now I guess I have been rolling to my back, snoring very loudly and making strange “mouth noises”, and my girlfriend has had to very aggressively shake me awake in order to get me to stop. She would push me over on my side, I would wake up (say sorry lol), fall back asleep and eventually roll on my back and start snoring again. Now, I’m aware that xyrem is controversial and I’m still evaluating it as a part of my treatment plan, but I’m wondering if anybody else has had experience with this and if they have found something that can help with it, ie side sleeping pillow, other snoring remedies, etc. Also inquiring about other general info/input regarding this topic. Thanks!
Best of luck! I really hope it works for you. I am patiently awaiting some CBD from hemp here in Mexico. I chose two products from two different companies so I can compare them over time.
Both have third party testing but Nuleaf has their testing results on their website. Not only for concentration of CBD but also tested for fungus, pesticides, heavy metals etc.
Pain and stiffness is a little more intense during the rainy season (currrently happening here) and I want it for that now during the day.
I will experiment a little more after I get back from my trip to Canada in late September.
Be careful of your product choice because there are a lot of charlatans who are jumping on the bandwagon.
Always, always start with a low dose and wait to see what happens over the course of a week. Dosage is by body weight and is posted in this thread.
i live in Indiana, so THC isn’t legal. Most jobs actually require drug screenings to be hired so we have to be very very careful with Hemp products. My cataplexy is anxiety based, and CBD is supposedly a natural anti anxiety kinda thing, as many people I know who use it, use it for that reason. I really do hope that it works though! Thank you for replying so soon too!
It won’t interfere. I also doubt that it’s going to help cataplexy but ya never know. Please keep us informed.
You must live in a state or country where THC is illegal. May I ask where?
So, I finally have an opportunity to use CBD (no THC, das illegal) to help with my cataplexy as I have reached the end of any meds to use for it. I’m going to be allowed to use it under the rule that I find out if it would affect/react to my stimulants. I take concerta 54mg in the morning after I wake up, and I’m allowed two 5mg ritalin tablets as needed during the day. Does anyone know if CBD would mess with them? Ive been looking into it for a while now and I want to try it out, so any help would be greatly appreciated!
The coupon has to do with the patient out of pocket. The coupon will be whatever makes your total out of pocket = $35. For instance, if your out of pocket for your insurance company is $125, Jazz would give you a coupon for $90 and you would owe Jazz just $35. If your out of pocket was $50, then the coupon would just be $15. So on the coupon program the patient would pay $420 a year. I’m not sure about anything Jazz might require from the physician other than the prescription, but Xyrem is used to treat cataplexy and excessive daytime sleepiness EDS related to narcolepsy. I do not know how idiopathic hypersomnia would be handled.