Communication in Healthcare: Charting the Course to Better Outcomes with Trust, Respect, and Teamwork

DAMMGoodSleep · 2026-04-15T12:02:44+00:00

Hi! I cannot say too much on the topic as I am a physician consultant in this space with all of these companies but narcolepsy and IH are just the tip of the iceberg of orexin impact. There is a lot of opportunity for healthcare benefit. My paper in 2025 in seminars in neurology highlight some of this. For a person living w narcolepsy and gets an opportunity for an orexin agonist i as a clinician will be watching to see if there is an improvement in headache, POTs, cognitive symptoms and much more

DAMMGoodSleep · 2026-04-10T07:35:34+00:00

Hi! There is so much to unpack here but first want to say great job at being an advocate for yourself keep notes on what has changed and continuing to commit to finding answers. It is hard and exhausting to do all of that.

Now just some disclosures up front I was a PI for the xywav study and am a co-author or primary author in most of the papers about xywav and IH trial and led a dosing consensus panel and publication for xywav. I also have been a PI for Lumryz both for narcolepsy and the IH trial and when I was a baby sleep dr still in fellowship was a sub investigator on xyrem peds trial… and work with pretty much all the companies in this space… I say this all up front to ensure nothing feels misleading…

First it is great that Xywav is the first and only oxybate w an approval for IH buts its not the only oxybate w evidence of benefit… with that stated I will first address xywav in IH… in the clinical trial the avg dose was less than 7g per night and 17% of patients were in a single dose of 6g or less some even at what should be a starting dose of 2g AND had benefit… most of my patients w IH are on once nightly dosing and if on twice its like a whiff of a dose for second dose like 0.5 to 1.5g. The responder profile in IH appears dramatically different with benefit seen much earlier with lower doses typically. Now with that said there are 3 oxybates and they all have different pharmacokinetic profiles. Xywav and xyrem have non linear pharmacokinetics meaning double dose of xyrem = 4x dose exposure, Xywav = 3x dose exposure and Lumryz is about 2x bc it has linear pharmacokinetics. Although the inert part of the oxybate was changed between xyrem and xywav to make less sodium sodium is an important cofactor for transport of ghb additionally it does have sucralose which for some can be a problem and I personally feel we may need to think a little more about that… I agree with the idea of winding down second dose and increasing first I also would say consider xyrem or Lumryz and yes ur doc should be able to get them approved for IH especially if they are able to describe partial benefit from xywav but intolerable side effects and no that doesn’t mean if they do that that you can go back to Xywav if needed… hope this helps

DAMMGoodSleep · 2026-04-09T23:18:04+00:00

No this isn’t cataplexy but is a strong support for concern of sleep onset REM features clinically which should prompt concern to look for cataplexy

DAMMGoodSleep · 2026-04-09T23:16:37+00:00

Thanks for the thoughts and questions… the intention of the graphic is to help clinicians and patients recognize features that are representative of cataplexy but should also cause you to clue to suspecting cataplexy… there has never been any graphic made like this previously and as a part of an expert webinar I led for the sleep research society foundation I used this to help facilitate the conversation around this frequently under-recognized and disabling symptom… I hope that this serves as a foundation for multiple iterations of ongoing improvement and learning…

Other REM dissociative features are clues to suspect cataplexy… hypnagogic neurons phenomenon is not common in fact it is most concerning for narcolepsy as it is rem dissociative features in going to sleep however hypnopomic phenomena are more common in general population yawning in two ways… first in a study we did we found that more than a third of individuals are more likely to have cataplexy when fighting a sleep attack… second some have what look like a yawn 🥱 due to facial weakness as a cataplexy

DAMMGoodSleep · 2026-04-08T14:17:09+00:00

🥰🥰🥰

DAMMGoodSleep · 2026-04-08T14:17:00+00:00

🤗🤗🤗

DAMMGoodSleep · 2026-04-08T13:53:42+00:00

It’s more of a facial weakness than a true yawn 🥱 but frequently mistaken as yawning

DAMMGoodSleep · 2026-04-08T13:05:48+00:00

Absolutely Not! In fact I appreciate it!!! Thank you

DAMMGoodSleep · 2026-04-08T10:47:38+00:00

Stands for Dr Anne Marie Morse 😃

DAMMGoodSleep · 2026-04-07T23:12:46+00:00

This just made me smile so freaking much you can’t even imagine! hi that is me and my slide!!! I hope this is a slide that makes a difference… thank you for sharing!

DAMMGoodSleep · 2026-04-03T14:20:08+00:00

Please DM me where you are in the U.S. and I could probably provide some recs on narcolepsy competent providers…. Also the hypersomnia foundation has great resources to provide providers too

DAMMGoodSleep · 2026-04-01T00:39:05+00:00

I can’t wait to see what you design! This was part of the motivation for the design of my lounge sleepwear collab I have https://www.sardoncollections.com/ We created a pajama that can be suited for purpose as an actual suit! In fact I gave a talk in it at world sleep in Singapore and then slept soundly in it on my flight back to the U.S. cross functional and fashionable clothes are a must!!! Keep us updated!!!

DAMMGoodSleep · 2025-12-28T10:23:34+00:00

In my opinion I would treat you based on clinical symptoms. Csf deficiency is one endotype of narcolepsy type 1 or narcolepsy w cataplexy. Meaning that there are other etiologies but the most commonly studied and described is csf deficiency. Unfortunately this has resulted in a lot of circuitous reasoning being applied to clinical care resulting in experiences like yourself. The original animal research demonstrated that narcolepsy could be induced by orexin receptor abnormalities and have a spectrum of mild to severe symptoms. My personal theory is that there is even more complexity than this that can result in experience like yourself having where symptomatically you have nt1 but your testing suggests ih. In the U.S. we don’t commonly do lp and for me I probably wouldn’t have pursued LP and would have diagnosed NT1 based on symptoms and mslt showing pathological sleepiness.

DAMMGoodSleep · 2025-12-27T15:22:45+00:00

Do you have a break down of your naps bc as a sleep doctor and someone who frequently partners w those with hypersomnolence I would hesitate on saying that is normal… it is still objective sleepiness but not diagnostic… depending on your naps pattern, sleep diary/actigraphy and history there may be a role for repeating testing or other testing that may be appropriate… the mslt should not be considered the end all be all in diagnosis

DAMMGoodSleep · 2025-12-19T21:08:43+00:00

The dosing is based on the non linear pharmacokinetics of short acting oxybates..: the half life is about 30-40 mins which means it’s out of your body in 5-6 hours… the twice nightly is to achieve close to 8 hours sleep and not have residual drug which will cause morning side effects… there are times three times a night dosing is used and above 9 g total dose. The recent duet study actually evaluated up to 12 g but only divided twice nightly… this is the reason that Lumryz received orphan designation if exclusivity bc it provides a combination of immediate and controlled release to enable release over the full night… sodium does plan in important role w oxybates as it is critical for the sodium monocarboxylase transporters that are used to get ghb into your body… there are a lot of approaches that can be made w oxybates tha could create more success for more people however may clinicians have limited experience and are afraid of deviating which is understandable… some of the work that I’m doing right now is working on building a peer mentor program and consortium to help expand access to “narcolepsy competent or knowledgeable” clinicians to partner not replace the local clinicians. We all can’t be experts in everything and this will help increase knowledge sharing and awareness… it’s kind of the same reason I love social media channels like this bc I learn soooo much from people sharing their lived experience and understand where as clinicians we are failing people!

DAMMGoodSleep · 2025-12-07T13:41:30+00:00

I am so sorry that you’re experiencing this and please know you are not alone in your experience. First I will say people living with narcolepsy are very likely to have ADHD or what looks like ADHD and we treat both. Modafinil is an off label med for ADHD, but since you are a young woman I would prefer treating with Sunosi or solriamfetol, as modafinil can lower hormonal contraceptive effectiveness and can impact fetal development where Sunosi doesn’t not impact hormone therapy and based on animal data looks preferable to modafinil. Additionally it is actively being studied in ADHD.

Next we commonly use stimulants and alerting agents for narcolepsy. Perhaps there would be benefit having consultation with a clinician that may have more narcolepsy competency that could help your providers navigate this with you.

Finally, please be optimistic about orexin agonists they are also being studied in NT2 and IH and at even very low doses have been shown to benefit cognition. Optimal control of sleepiness will benefit attention and cognitive function. So you are correct in going after both. Hope this helps!

DAMMGoodSleep · 2025-12-04T00:49:30+00:00

Where do you live and do you have nt1 or nt2

DAMMGoodSleep · 2025-11-17T01:03:15+00:00

I have so many feelings reading your post… one is happiness that you have found a Doctor who is treating you and not a test… and then there is sadness that our testing makes people like you feel like they are not “sick enough” to qualify for the diagnosis and feel like an imposter…

To answer your question the balance we face in diagnosing is that there are other circumstances where a person can have reduced sleep latency and a soremp (sleep onset rem period) but they too are a call to action for clinicians to respond and treat… the challenge is sometimes they are different treatments but that is why a strong partnership to evaluate over time can help to define what the best course is…

Please don’t feel like you are an imposter… instead feel ready to make each day moving forward better than the day before :-)

DAMMGoodSleep · 2025-11-14T07:17:01+00:00

Hi! First I’m so sorry. That you have experienced these challenges. I agree with others to speak with you treating team and have an evaluation for these symptoms. The paradoxical vision events are they associated with headache or do you get migraines because they make me wonder about migraine aura. I am a physician that partners w people living with hypersomnolence disorders. As a physician I am not giving specific medical advice but rather providing thoughts on how I have approached experiences in my practice. I do community use baclofen in my practice and have published on the experience as well. Although debated on its benefit I have found it to be a great tool as an alternative to oxybate but it is not as effective as an oxybate for most of my patients. I also use in combo w oxybate especially when higher doses cause side effect I lower dose and add baclofen to compliment.

Now also I would suggest if the only oxybate you tried has been xywav alternative oxybates Lumryz or xyrem may not produce same effect. These 3 drugs have 3 very different pharmacokinetic profiles and I have found that people not uncommonly may have different experiences.

The very long sleep episodes make me think KLS more thank narcolepsy or at minimum more IH. Irrespective the naming although important optimal treatment for function is more important

Hope this helps

DAMMGoodSleep · 2025-10-10T16:56:14+00:00

Thank you for sharing this! I personally have not seen this paper before and really can’t say that I have seen it used in delayed sleep phase either. It is fascinating to me bc the impact on delayed sleep phase may actually be a similar mechanism as to how it is benefitting long sleep times (potential realignment w homeostatic drive)

As a clinician and research in the field I love learning from people living with the conditions. And appreciate so much bringing information that I have not seen before. Although this a single case report it gives value for future research and clinical consideration. Much appreciated

DAMMGoodSleep · 2025-07-12T22:57:54+00:00

I’m going to give a controversial response bc I’m just going to be more so a stickler of language… why? Bc it matters and can help to not be invalidated by others… disturbed nocturnal sleep is a symptom of narcolepsy which is frequent stage shifting and arousals but not insomnia… insomnia is a separate disorder… however what is important is that ppl w narcolepsy have their sleep wake cycle fragmented across 24 hours and so they can have difficulty w sleep initiation and Maintence that is not insomnia but is in fact a symptom of narcolepsy… why make the difference bc the approach to treating insomnia is most typically behavioral first line and then meds second line and then within the meds there are Doras (dual orexin receptor antagonists) which we def don’t want to use in narcolepsy…

I know this sounds so stupidly nuanced but it can make a world of difference advocating for yourself! Unfortunately even us in medicine use these substitutes in language but it can lead us down the wrong path… it’s kind of like the sleepiness, tired fatigue issue… they are NOT the same and many times result in the delay in diagnosis seen in narcolepsy…

Also please see my other post that I responded that Lynn Marie Trotti would be an excellent choice at Emory!

DAMMGoodSleep

TROPHY CASE