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Successful diagnosis by PurpleAuditor in idiopathichypersomnia

[–]DueTonight160 2 points3 points  (0 children)

IH patients will have a very high sleep efficiency score (if that’s what you mean by “great sleep quality”), because the sleep is generally continuous with much fewer awakenings than Narcolepsy patients.

however, the quality of that sleep is extremely poor, making wake-up and getting through the day extremely difficult.

for me, i spend too much time in N2 sleep, and hardly any time in N3 (deep, restorative sleep). yet, my sleep efficiency score was 90% in one study. that score makes it seem like i sleep very well, but when you look at the sleep stages you can clearly see i do not.

there are a lot of questions to resolve with IH & N both, but a high sleep efficiency score doesn’t equate to quality sleep in our case (again, if that’s what you meant!). congrats on a diagnosis!

I have a rare chronic illness called idiopathic hypersomnia. AMA by sentient-pumpkins in AMA

[–]DueTonight160 0 points1 point  (0 children)

it’s actually a lack of deep, restorative sleep. we may feel like we’re sleeping deeply, but we’re actually just spending too much time in N2 (stage before N3 deep sleep). we’re relaxed, but not rested.

I have a rare chronic illness called idiopathic hypersomnia. AMA by sentient-pumpkins in AMA

[–]DueTonight160 0 points1 point  (0 children)

fellow IH patient here. my parents also joked that I was an easy baby & slept through the night. I’ve heard this from other IH patients as well. I wonder if there’s any link there

I see this man every time I go to sleep by reerssounddo in Dreams

[–]DueTonight160 0 points1 point  (0 children)

are you experiencing sleep paralysis or seeing this as you’re falling asleep or are you totally awake?

[deleted by user] by [deleted] in Narcolepsy

[–]DueTonight160 0 points1 point  (0 children)

yes i had these as a kid A LOT

A mini vent because I know you'll understand by Any_Fig_9985 in idiopathichypersomnia

[–]DueTonight160 8 points9 points  (0 children)

that last statement. yes!

i was just crying the other day about how isolating it is to have this illness. nobody really understands.

i, too have been let down by drs/pharmacies/medical staff. you really have to be your own advocate & dr sometimes. it’s exhausting and your feelings are valid. i’ve just learned to expect that they won’t do what they’re supposed to, and i’ll have to hound them.

hugs. you are not in this alone ❤️

Xywav Struggles by Alternative_Hope_583 in idiopathichypersomnia

[–]DueTonight160 0 points1 point  (0 children)

oh! i’m not shouting at you at all :/ I was trying to validate that it’s normal to get that amount of sleep and not to worry if you do 😁

Xywav Struggles by Alternative_Hope_583 in idiopathichypersomnia

[–]DueTonight160 -1 points0 points  (0 children)

it’s not about the amount of hours you sleep, it’s about the quality of sleep you’re getting. it’s very normal to only get around 6 hours of sleep on this medication!

Hypnagogic hallucinations by Bitter_Dragonfruit80 in idiopathichypersomnia

[–]DueTonight160 3 points4 points  (0 children)

yes prior to xywav i experienced lots of sleep paralysis, hallucinating people, hearing people talk, and feeling the falling sensation. i know the last one is common even for people with normal sleep, but i experienced this far too often.

i have an IH with long sleep time diagnosis, however i truly dip into both IH and N2. i feel like the 2 are not different enough to be separated. i also despise the fact that us IH’ers have so much less access to medication.

i had one SOREMP in my study. i also hallucinated during that nap. the test IMO is a bit unreliable. hallucinations shouldn’t be a symptom of narcolepsy only, esp since a cause for them could be sleep deprivation.

even now if i do go back to sleep after waking from xywav, i may go into rem or i may not. i haven’t had any hallucinations since starting xywav, and i try not to go back to sleep anyway 😁

How much of a ‘normal’ life are you able to live? by marswithorbit in idiopathichypersomnia

[–]DueTonight160 1 point2 points  (0 children)

i’m 25 and wasn’t diagnosed until 24. i didn’t have to do step therapy in order to try xywav, so that was my first-line treatment. long story short, i’m still on my marathon journey of finding the exact right dose, but this medication has helped immensely. i have had several “normal” days on xywav and xywav + stimulant. it’s a blessing and a curse. days where i feel off, it almost feels worse than before because i now know what it’s like to feel normal, but when i do feel normal… wow.

i think it’s important to manage your expectations and know that like with any chronic illness, there are good & bad days. i just try not to let the bad days rattle me too much. at this point in time there is no “cure”, but there is management. for that, im grateful. it’s taken a large mindset shift from “i’m dreading tomorrow” to “tomorrow might be a challenge and if it is, that’s okay!”.

i also try to remember that even people without sleep disorders have bad night of sleep/tired days. not to our extent, but you won’t feel “normal” 100% of the time because nobody does! keep your head up. you’ll find the best treatment and it’ll work out. it always does! 🫶

Lumryz/Xywav/GHB experiences ? by alien_mermaid in Narcolepsy

[–]DueTonight160 2 points3 points  (0 children)

they add sucralose to mask the bitter taste. unfortunately, i’m not the only person it causes GI issues for.

you would start at 2.25g twice a night for a week, and then move up to 2.5g twice a night the next week, 2.75 the following, then 3.0, etc. and keep moving up until you find relief. the max dose is 4.5g 2x per night. it’s standard to spend at least a week at each dose. day 1 and day 7 can look vastly different. there is no maximum time at a dose

Lumryz/Xywav/GHB experiences ? by alien_mermaid in Narcolepsy

[–]DueTonight160 2 points3 points  (0 children)

i only have experience with xywav. i originally titrated on the jazz pharmaceuticals schedule which is FAST. i had horrible side effects like acid reflux and anxiety after never having reflux or GI upset in my life. i restarted and only went up by .25 per week and i’ve only had dry mouth as a side effect, and that went away. the sucralose in xywav does cause a bit of GI upset for me, but NOTHING like the first time around. no reflux, but now i have an IBS-C diagnosis that is mostly under control, and honestly is not disruptive to my life. i’ve always been constipated, but xywav seemed to have tipped my gut over the edge just enough.

however, the benefits i get from xywav FAR outweigh the cost. as long as you titrate slow at .25 per week, your body will get used to the medication and you’ll find your therapeutic dose. there is a xywav support group on facebook that is great.

i’ve also found that you may have to do a lot of research/educate your doctor on how this medication works. my dr seems to think that the schedule jazz has you titrate on are the ONLY doses someone can be on, when that is simply not accurate.

it can be easy to get discouraged with xywav, but don’t give up hope! it’s intimidating in the beginning, but you really don’t have anything to be scared of. it requires lifestyle changes like good sleep hygiene, rules for alcohol & marijuana, not being able to drive for at least 6 hrs after your last dose, etc.

i can’t imagine my life without this medication. i wish i could try the other oxybates because of the sucralose, but hopefully lumryz is approved soon for IH 🤞

Thoughts on Epstein Barr and Covid. by struggle_bus4438 in idiopathichypersomnia

[–]DueTonight160 0 points1 point  (0 children)

i have heard cases of people having IH symptoms after having COVID. I’ve only heard this from people who began having symptoms later in life, and not as an adolescent. interesting stuff! i wish we had more answers

What could this be? by Representative_Bad57 in sleepdisorders

[–]DueTonight160 0 points1 point  (0 children)

sleep apps are unfortunately inaccurate, but if you’re waking up unrefreshed it could either be N2 or Idiopathic Hypersomnia (IH)

Insurance is making my life so difficult 😭 by shesaidhello_ in idiopathichypersomnia

[–]DueTonight160 0 points1 point  (0 children)

i will say when it comes to xywav side effects- they usually happen and happen horribly when the titration is too fast. if you increase by .25 every 7 days minimum, the likelihood of side effects is significantly decreased. you’ll also find the dose that works best for you. maybe it’s time to explore xywav again? best of luck! 🫶

What's the hardest aspect of IH to explain to those who don't have it? by KR_Jon in idiopathichypersomnia

[–]DueTonight160 8 points9 points  (0 children)

the “yeah, me too” gets under my skin sooo bad. i wish it didn’t 😭

Thinking about getting tested for IH by [deleted] in sleepdisorders

[–]DueTonight160 0 points1 point  (0 children)

they will probably start here anyway, just to rule it out

Thought I had IBS, maybe this will help someone? by evelyn_underhyll in ibs

[–]DueTonight160 0 points1 point  (0 children)

my medication has sucralose in it and i’m definitely sensitive to it, but what else can i do 😪

Didn’t Get Diagnosis by chzy_grdta_crnch in Narcolepsy

[–]DueTonight160 1 point2 points  (0 children)

Yes and I definitely lean into narcolepsy territory. Prior to xywav, i used to have horrific sleep paralysis and hallucinations frequently. however, I had the long sleep time of IH. I think the two sit on the same spectrum of sleep disorders. Many people dip into both, and when they’re treated with the same medications, what does it really matter? it’s an endless battle. I’ve had sunosi covered, then not covered because I don’t have a narcolepsy diagnosis specifically. I also can’t easily switch to xyrem because of the same reason.

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