Reply To: Sleeping mask? Napping tips?

@sleepy-rbd Thank you! I’m glad this little project has blossomed and continues to grow. The NN forums saved my life and the community there became a second family to me and so many others. It’s really remarkable to me what a group of sleepy folks can do on a $500 budget from generous contributors and some determined volunteers. It was a hail mary when we started this site but it lifts my spirits whenever someone mentions it has helped them. The project was easily the most rewarding thing I’ve ever done.

It still boggles my mind why NN just sort of abandoned us without bothering to send an email to us even after we pleaded with them to continue the forum and offered to pay for it. First we received no response, then we were told the $70 per month was too expensive for them to maintain it (despite their several hundred thousand in yearly income). Then were were told it was Russian hackers…

It was a dark day for all of us but I’m glad it happened now since we cast off the pharmaceutical company shenanigans that likely resulted in the NN forum shutdown. My only regret is not having as much time as I would like to devote to the site.

And holy hell, we are getting remarkably close to our 2 year anniversary! Crazy!

I’m glad you and the others in this group took a chance on our crazy idea of creating our own home πŸ™‚

Reply To: Cannabis Oil Cheat Sheet

This article explains why I want you to put the cannabis oil UNDER your tongue so it is absorbed into the big veins under the tongue and is not ingested (going through the alimentary canal). I also do not advocate smoking anything.

The link that I posted above is now going to a recipe for cannabutter. Such is the internet.
Hopefully THIS link will answer questions about sublingual absorption and it won’t change.

Direct Sublingual THC Dosing – The New Frontier of Cannabis Administration

Reply To: Traveling / Flying with Sleep Disorders / Tips & Challenges

When I’m travelling, my checklist (in relation to narcolepsy) is:

– Wear a medical ID bracelet. I tend to wear one anyway because I have a habit of falling asleep on public transport, but I definitely make sure I have one when I’m travelling.

– Have all my medication with me in hand or carry-on luggage.

– Keep all my medical in original containers. I tend to decant my tablets into a daily pill dispenser at home to remind myself what I have or haven’t taken on a specific day, but when travelling, I keep everything in the original packaging from the pharmacist/chemist.

– I have a letter from my GP and consultant pharmacist detailing what medications I’m taking and why. The letter specifically addresses the drugs that are controlled, and provides contact information in case any information needs to be verified.

– I allow myself extra extra EXTRA time to go through customs. Most of the time, I don’t have any problems, but was delayed once while officials double checked my plethora of medication packets.

– If I anticipate stress getting to the airport or if the flight is in the morning and I’m not sure I’ll have my mental act together that early, I’ll book a hotel the night before either in the airport or extremely close to it so getting there is as quick and stress-free as possible.

Reply To: Sleeping mask? Napping tips?

In preparation for a couple of upcoming trips, I did a quick forum search this morning for “earplugs”. That might sound rather random, but I thought I remembered @ferret mentioning a particular kind in a previous post. I couldn’t believe this discussion was in 2017…Wow.
I just wanted to let you know that the access to previous information is one of the many valuable aspects of these forums. This site continues to be a resource and gift that just keeps giving. When so much was lost with the discontinuation of the NN forums, you guys stepped up to the plate by providing the opportunity for support and the flow of information to continue.
Well done! Many thanks to all of you who made and continue to make this site possible! : )

Reply To: help GP wont listen and instead thinks i am 'mentally ill'!

Are you able to see another GP at your practice? I know at my local surgery there are some GPs I love who are very knowledgeable and informed, and there are some GPs I avoid like the plague as they’re dismissive of any symptom that’s not essentially “I’m dying right now.” I’ve usually had no problem seeing any GP at my practice, not necessarily my named one.

There are most definitely sleep specialists in the UK. It’s just unfortunate that GPs are most often the gatekeepers for referrals. πŸ™

Does your local hospital have a sleep department? If so, can you speak to PALS about how to get a referral in face of a reluctant GP? I’m assuming being in Kent, you’re a bit removed from the catchment area of Guy’s and St. Thomas’? Narcolepsy UK might also be able to help find a specialist?

Reply To: Genetics of Narcolepsy / HLA DQB1 0602

Sleepy RBD
There is absolutely no harm in checking for HLA DQB1 0602 in fact we routinely check in those we suspect of having narcolepsy. We do also check CSF fluid if there is any doubt.
Everyone uses, or should be using the PSG/MSLT for help with the diagnosis, with the understanding that frequently they are unreliable and not reproduceable. If REM episodes do not show up on MSLT the patient is dismissed as negative for narcolepsy, and this may not be the case at all.
I still think that history and careful questioning along with the blood tests we now have available is our best option.
Diagnosing narcolepsy requires a high degree of suspicion on the providers part and insistence on the part of the patient for a proper diagnosis.
In the instance of Narcolepsy with Cataplexy we suggest recording of episodes if possible 9everyone has a cell phone nowadays). What better evidence could be presented?
Thanks for the post and link

Reply To: Genetics of Narcolepsy / HLA DQB1 0602

I came across the link below and wanted to share it along with a few thoughts.

Diagnosing narcolepsy

“About 98% of patients with narcolepsy who have an orexin deficiency express the human leukocyte antigen (HLA) molecule DQ0602, whereas only 18%–25% of the general population expresses the molecule.”

“Meanwhile, twin studies suggest that the environment is a factor in narcolepsy, as there is only 25%–33% identical twin concordance in the condition.”

First, my disclaimers…
I am not a medical professional…
In addition, I recognize there are a certain number of people who have the HLA DQB1 0602 marker who do not have narcolepsy and also the information concerning identical twins. With that being said, let’s balance that for a moment with the other information from the link and post above.

CONCLUSIONS: Our data support the preponderant role of HLA-DQB1*06:02 in susceptibility to NT1/NT2 across all ethnicities. HLA-DQB1*06:02 negativity should make clinicians cautious in excluding other diagnoses.”

I try to post the Science and research and let others draw their own conclusions, so please take the comments below as strictly my thoughts and opinions.

For those who might have come upon this post who are unfamiliar with my story, here’s a brief background. I have symptoms of NT1 and RBD. For me, cataplexy is the symptom that presents my greatest challenge in living with these sleep disorders. Without cataplexy and the fact that it increased in frequency and severity over the years, I probably would have remained undiagnosed. I have acted out my dreams and shown other symptoms of sleep disorders since childhood. My paternal grandmother, father, and uncle had similar sleep issues. Fast forward decades…

As a parent and grandparent, of course, I hope my children and grandchildren never develop this disease; however, if any of them were to show signs or symptoms, the genetic test for HLA DQB1 0602 would be the first test I would suggest to them. I feel strongly about this due to our family history of sleep disorders and also after reading countless other stories of misdiagnoses and years of unanswered questions for so many people. Perhaps I have read too many accounts from others, but I would never want anyone to go through being wrongly diagnosed with ADHD, anxiety, depression, or …(feel free to add to the list).

I am concerned by the wait for additional tests and the potential cost factor that may result due to impending patents and the involvement / interest of large pharmaceutical companies. Based on what is already known, I am left asking…

If one suspects narcolepsy, especially in reference to NT1, what would be the harm in taking a simple genetic test (already available and affordable) which could detect the HLA DQB1 0602 marker? It could potentially help answer a lot of questions one way or the other.

Reply To: Cannabis Oil Cheat Sheet

It’s been a while since I posted on this thread so I’d like to give you an update. I started out in this process by using a pure Indica called Afghani (only THC NO CBD). That’s what gave me the deepest sleep and eliminated the cataplexy. Then I couldn’t get it any more and had to use a half THC half CBD from heaven only knows what strain. Okay, but not the same and I had to take twice as much to achieve mediocre results.
FINALLY… I am two weeks into a new supply of PURE INDICA based HINDU KUSH (only TCH no CBD). OH MY! What a difference!!! Not only is it a wonderful deep sleep but I’m not having breakthrough cataplexy AT ALL. It wasn’t the heavy fall down cataplexy that I used to have but slight… still, I didn’t appreciate it showing up in any shape or form once I had been able to banish it. I also had to cut my dosage back to a half a grain of rice worth sublingually just before bed.. exactly as I had originally started out with the Afghani.
So, it does a better job and the product lasts twice as long. Win/win
The price? 1200 pesos for a 10 ml syringe and that’s gonna keep me going for at least two years.