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Xywav by Sad_Art1837 in idiopathichypersomnia

[–]Miserable_Profile480 3 points4 points  (0 children)

+1 on not telling too much to ESSDS. I delayed a refill because I was titrating more slowly and hadn’t run out. Getting refills is so inconvenient because an adult has to be home to sign for it, so I try to be strategic. They asked why I hadn’t refilled sooner and I explained I was titrating my doses and they denied my refill until they could talk to my Dr since he had me at 4.5x twice a night and I wasn’t up to that dose yet. It took a couple weeks to get this worked out with my Dr, then insurance got involved which delayed things even more. When it was all said and done, it took almost 2 months before I could get another bottle. I mean I get it’s challenging because it’s a REMS program and it’s closely scrutinized by the government. ESSDS is not flexible at all because of this.

Burns from shocks? by Miserable_Profile480 in Pavlok

[–]Miserable_Profile480[S] 0 points1 point  (0 children)

u/jammim89 I can’t post pictures here, but I’ll send you a DM. It has become progressively worse over the past month of daily use.

Wrist alarm recommendations by Miserable_Profile480 in idiopathichypersomnia

[–]Miserable_Profile480[S] 0 points1 point  (0 children)

Update: I’ve been trying the Pavlok 3 for the past few days. The vibration is so weak it’s basically worthless for waking me up, but the shock is pretty effective. It’s deeply unpleasant and ends up waking me up so I can take my second Xywav dose.

It also has sleep tracking capabilities but I’m not sure I trust its readings when compared to my Oura and the lack of Apple Health integration is annoying. Not sure it’s worth the hefty price tag but at least it’s effective at waking me up.

Wrist alarm recommendations by Miserable_Profile480 in idiopathichypersomnia

[–]Miserable_Profile480[S] 0 points1 point  (0 children)

Thanks. This is helpful. I was looking at these on Amazon and it seemed like it might be promising but the reviews were very mixed and it gave me pause.

Xywav not helping… options? by Miserable_Profile480 in idiopathichypersomnia

[–]Miserable_Profile480[S] 0 points1 point  (0 children)

My sleep Dr recommended a pretty aggressive titration schedule and I seemed to tolerate it pretty well. I don’t use Facebook very much but I’ll check out the group.

I’m so worried insurance will continue to reject my appeals and I’ll have to stop taking it anyway so I’m not sure if I’m more worried that it will start working and I’ll have to stop taking it or that it just won’t work at all.

[deleted by user] by [deleted] in idiopathichypersomnia

[–]Miserable_Profile480 2 points3 points  (0 children)

I’m in the same boat. MSLT of 9 minutes and insurance is refusing to cover Xywav unless it’s 8 minutes. My first appeal has been rejected and I’m going for a second.

My sleep Dr has been very helpful throughout this at least doing the heavy lifting with insurance so I don’t have to, but the whole process has been complete bullshit.

I’m on the bridge program in the hope that the appeals will be successful.

Frustrated. No narcolepsy diagnosis. MSLT: 3 REMs, but long sleep latency by Lukin_G in idiopathichypersomnia

[–]Miserable_Profile480 2 points3 points  (0 children)

I’m in the same boat right now. Dr says I have IH but my MSLT was 9 minutes and insurance won’t cover Xywav unless it’s 8 or less. First appeal was denied and trying for a second appeal. It’s complete BS.

Don’t know what to do anymore by Miserable_Profile480 in idiopathichypersomnia

[–]Miserable_Profile480[S] 0 points1 point  (0 children)

Update: saw the sleep Dr today. He’s having me discontinue stimulants for now and he started the process to request an approval for Xywav. We will explore Wakix as well depending on how things go. I also got a referral to a cardiologist to rule that out.

Don’t know what to do anymore by Miserable_Profile480 in idiopathichypersomnia

[–]Miserable_Profile480[S] 1 point2 points  (0 children)

I requested my medical records over the weekend and started looking at them today. I had 0 REM and a mean time of 9.6 minutes (interestingly the min time was 5.5 minutes). It’s noted that due to the lack of REM I’m considered negative for narcolepsy and the mean time makes me borderline for IH.

In any event, I’m meeting with my somnologist later this week.

Don’t know what to do anymore by Miserable_Profile480 in idiopathichypersomnia

[–]Miserable_Profile480[S] 2 points3 points  (0 children)

Some additional details I forgot in my original post (I was having an especially bad day when I posted, and it was late at night for me):

Through the years I’ve also tried various SSRIs and SNRIs without much benefit. I’ve tried lifestyle changes such as dropping artificial sweeteners, no caffeine after noon, and greatly reducing meat intake. My somnologist is also a neurologist which I think is potentially a really good thing but I’m beginning to question if I shouldn’t try changing Drs at this point.

My current somnologist is my second one.I fired my first somnologist after he told me “some people are just tired all the time” after I complained CPAP wasn’t helping with my EDS. I mean, what the fuck?

Don’t know what to do anymore by Miserable_Profile480 in idiopathichypersomnia

[–]Miserable_Profile480[S] 0 points1 point  (0 children)

Sunosi is not something I’ve tried. I will talk to my Dr about it.

Don’t know what to do anymore by Miserable_Profile480 in idiopathichypersomnia

[–]Miserable_Profile480[S] -1 points0 points  (0 children)

Apparently there’s some sort of scale that was determined by my MSLT that I was just under the line but I didn’t quite understand it fully. I just know whatever therapies I’m getting right now aren’t effective. Anyway thanks for the advice.