This topic contains 11 replies, has 10 voices, and was last updated by LaceyZzz 8 months, 2 weeks ago. This post has been viewed 947 times
- August 31, 2018 at 12:55 am #7565
A Stanford Sleep Medicine Specialist has graciously offered to answer questions for us! I’m supposed to give him a call tomorrow or next week to work out the exact timeline and other stuff but in the meantime, if you have any questions you’ve always wanted to ask someone that has treated a ton of cases of narcolepsy, please do so here. It won’t be a live format so you should have a week or so to ask questions, which I’ll email to him. He can’t answer personal health questions and may not be able to answer all of the questions.
Please limit posts to just questions on this thread. If you have any questions about the process, feel free to start another thread or PM me. Thanks!
I spoke with him on the phone tonight (Sept 4th). He’s super nice guy btw and he asked me to go ahead and start sending him questions. He may answer them over time – ie updated each week etc. He may regularly contribute if people are interested.August 31, 2018 at 1:28 am #7570
Hi, thanks for this AMA! I’m interested in hearing about any new medical avenues being explored for Idiopathic Hypersomnia as well, and for deep sleep disorders. I live in Denmark and currently we only have two options (motiron and modafinil) with a third (pitolisant) just entering the market. Neither of the first two had any effect on me, and as such I am currently just managing symptoms (which, with IH is tough as naps have a detrimental effect on energy levels.) I read about the opiod-study but assume that is related to N only?
I also suffer a lot from deep sleep issues – night terrors, hallucinations, “visitors”, frequent waking etc. I am currently on benzodiazepines to curb this, however all it’s really helped is the night terrors. Are there any alternatives or studies into these issues? I am especially interested in coming off the hard drug that taking benzos is. Would medicinal marijuana be a potential avenue to explore in relations to deep sleep disorders, or is there anything in the works to look at this?
Thank you again!
Cecilie.August 31, 2018 at 2:17 am #7577
Where is the most innovative research being done for narcolepsy and what are some upcoming treatments that appear promising?August 31, 2018 at 7:40 am #7586
A minority of PWN have the symptom of sleeping excessively long periods of time without conscious waking (18-24+ hour ‘nights’).
Is there anything different that should be done in the management of ‘long sleepers’? Anything to avoid?
It seems to be a rarely addressed area among sleep specialists, and it can be difficult to find accurate information.September 1, 2018 at 3:08 pm #7606
That’s really neat, I know that Project Sleep with Julie Flygare is hosting a very similar event with Dr Emmanuel Mignot and Watson, the chihuahua with narcolepsy which is an ama and live fb event, might be something folks want to listen in on if they want, in case someone has a question they may not have thought of. Might be insightful.
That’s great that you got something similar going on here for us too. The doctors are very generous for donating their time to answer our questions.September 1, 2018 at 3:50 pm #7608
Oh! And 2 more questions. The first serious, the second is a fairly light-hearted but curious question.
#1: What research or trials are currently being done in the area of cataplexy? It feels like it affects quality of life more than both society and medical professionals realise, yet there appears to be next to no management options (especially outside the US) other than managing narcolepsy and hoping that makes it better. Will we hopefully be seeing some advances in cataplexy care in the near future?
#2: There are mixed reports on the consumption of cheese (or all dairy) causing an increase in dreams – particularly vivid dreams, bizarre dreams, nightmares, or lucid dreams. It’s mostly anecdata at this point, but it’s interestingly widespread.
Is there any truth to this phenomenon in your experience, and what does that mean for PWN with their increased REM? Should we be avoiding cheese/dairy around predicted sleeping periods, or is it all a bunch of udder bull?September 4, 2018 at 3:56 pm #7652
My question for them:
“Dr Mignot, does your facility have the capability to explore drug interactions, specifically a report of one between sodium oxybate and levothyroxine? This should be of strong professional interest since it could make sodium oxybate a reliable drug, and could greatly improve the lives of many patients due to correcting the current handling of levothyroxine?”
Pretty much, trying to find researchers who find this interesting and are in a good position to investigate is being extremely troublesome. I’m kind of desperate for some more levothyroxine since I feel rather a lot better and suddenly become a functional person.September 5, 2018 at 12:34 am #7666
I am offering myself as a guinea pig because I doubt that Stanford is doing any studies on Cannabis Oil. I can eliminate my cataplexy (within two weeks) by taking it and I can bring the cataplexy back within four days of stopping it. Anybody in Stanford interested in wiring me up to find out what is going on?
It’s cheap and effective.September 5, 2018 at 7:05 am #7668
1. What has been your experience with narcolepsy in families? In those families, what was the range in numbers of generations and individuals impacted and severity of symptoms?
2. In your patients, what has been your experience with childhood REM behavior disorder symptoms as an early marker / manifestation for the future development of NT1 / also RBD symptoms in your narcolepsy patients in general?
Many thanks for your time!
@jasonm Thank you for working to set this up!October 7, 2018 at 4:49 pm #8020
Hey, whatever happened with this thread? I keep periodically coming on here to check out updates but nothing 🙁October 10, 2018 at 12:28 pm #8038
I am interested in how you use your Cannabis Oil. I have always suffered from terrible morning fatigue, or grog. Now, after a year long detoxing fight with Lexapro, I am left with deep, vivid, and disturbing dreams with extreme morning grog. I have to wake up at least 2.5 hours early to begin to get ready for work. I am willing to try anything. I am down to 2.5mg of Lexapro from 20mg over a period of a year.
Delta88October 12, 2018 at 11:03 pm #8067
What are some other treatments for symptom relief other than than what’s normally prescribed? I’m struggling with stimulants not helping much with the sleepiness and it’s so hard to focus on work through the brain fog. My neuro is pushing hard for me to try Xyrem but I’m hesitant for a number of reasons including my lifestyle. I’ve read a bit about some expierements with canibus oil, and a type of Fungi/mushroom, etc.
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