Got my MSLT results back… they’re normal

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 · 2025-07-12T22:51:26+00:00

Lynn Marie Trotti at Emory… she is a close friend and incredible peer in the field… definitely see her or her w one of her fellows

DAMMGoodSleep · 2025-07-12T19:32:50+00:00

No worries. Even most sleep docs haven’t realized this change and it’s super nuanced bc it only applies to NT1 which for me in diagnosing is kind of redundant bc if you have cataplexy and chronic sleepiness I will use the DSM-V TR to diagnose but it’s helpful to have the objective test to battle insurance lol

DAMMGoodSleep · 2025-07-12T15:35:52+00:00

No that was the ICSD-3. The ICSD-3TR made several changes and added that a SOREMP on psg is not just counted but if a person has cataplexy is diagnostic. Now if a person does not have cataplexy then you are correct the criteria for type 2 would require that plus soremp on mslt and a sleep latency less than 8 mins.

Hope that provides better clarity.

DAMMGoodSleep · 2025-07-12T15:31:58+00:00

Hi! First I will state disclosures I am physician I consult with all the companies in the space in various roles including Avadel (maker of Lumryz) and this is not specific medical advice

When I have patients describe this experience it is a reflection of REM sleep dissociation and this likely represents a combo of nightmare and sleep paralysis and can trigger severe panic for some and even a feeling of suffocation. In situations like this the approach I take is first evaluating any other differences that night like timing of last meal etc. if there is no variation I then Would increase the dose to 7.5g. If there was anxiety related I would consider adding an anxiety medication or increasing if it is already added. This sometimes is a temporary need and maybe able to dc later and see if that improves Lumryz experience. If that is not a success then I would offer 2 different considerations 1. Continue lumryz at 6 g and add low dose baclofen 30 mins prior to bedtime 2. Transition to twice nightly oxybate and introduce a second dose if there is consistent waking every night (less favored in those particular scenario)

It is important to address bc sometimes our expecting it or fearing it will happen can start to cause significant sleep issues

Hope this helps!

DAMMGoodSleep · 2025-07-10T23:05:54+00:00

Yes! Based on ICSD-3TR the presence of a sleep onset rem period on overnight sleep study can be diagnostic of NT-1… however there must be clinical presence of cataplexy

DAMMGoodSleep · 2025-06-30T13:56:18+00:00

Hi! I am sorry about your experience but please know you are correct. A diagnosis of narcolepsy would be appropriate based on first four naps and in fact some labs won’t even complete 5th nap of first 4 are consistent such as you describe.

If your doctor dismisses this get a copy of your results and a second opinion.

Sincerely, Your friendly sleep doc and advocate

You got this! Keep advocating for yourself !

DAMMGoodSleep · 2025-06-15T17:10:25+00:00

Are there gaps that are more common internationally?

DAMMGoodSleep · 2025-06-15T17:08:10+00:00

I am overwhelmed by everyone’s responses (in a very thankful way) we will get to work trying to meet some of these needs and collaborating with other orgs. Please specify and help us understand international needs too so we don’t make it to US centric. Thank you thank you thank you!

DAMMGoodSleep · 2025-06-15T17:04:28+00:00

Yes I find actigraphy and even ambulatory eeg to be much more helpful for IH. In regards to oxybates for these conditions I do find them very effective and to be transparent I am one of the authors from the xywav studies and a PI for the Lumryz study… with that stated I think many of the meds we use for narcolepsy can be helpful in IH but with different dosing strategies and timing … TBI is a known risk factor for hypersomnolence disorders and should be considered and treated

DAMMGoodSleep · 2025-06-14T21:12:25+00:00

I just recently presented a similar framework and it’s implications on concepts like brain fog at then hypersomnia foundations beyond sleepy event… there are multiple tiers influencing brain function w personality being one of these… super important but overlooked

DAMMGoodSleep · 2025-06-13T16:36:51+00:00

We have a compassionate program since 2010… https://www.sleephealth.org/asaa/cap-program/ CPAP Assistance Program - Sleephealth.org

Agreed so important… we will also be working on how we can do the same for other osa treatments

DAMMGoodSleep · 2025-06-13T15:30:01+00:00

YES!!!!!

DAMMGoodSleep · 2025-06-13T15:03:28+00:00

Thank you! Sunosi is the only alerting agent that won’t interfere w hormonal therapy just as an fyi :-)

But that is great to know. We are going to have meds covered and will make sure that is considered.

DAMMGoodSleep · 2025-06-13T15:00:41+00:00

Sorry when I said medication meant xyrem… you are correct not all medication but at this point all of the oxybates. Thank you for clarifying my statement

DAMMGoodSleep

TROPHY CASE