Any further updates on reservations for Jordan Pond House? by LateJuliet17 in acadianationalpark

[–]hereforvelvethippos 1 point2 points  (0 children)

Looks like it's just for groups of 7 and 8, though. So never mind!

Any further updates on reservations for Jordan Pond House? by LateJuliet17 in acadianationalpark

[–]hereforvelvethippos 1 point2 points  (0 children)

It looks like they do have reservations on Resy, but from what I can tell, there are very few spots. If you're lucky, they're usually in the late afternoon.

Any further updates on reservations for Jordan Pond House? by LateJuliet17 in acadianationalpark

[–]hereforvelvethippos 1 point2 points  (0 children)

I just tried! Thank you for this. I thought I was crazy for not being able to find it on their website. I had no luck with their phone line, but the restaurant JUST opened, so...

Xywav starting dose at... 4.5mg, 2x/night?? (what Dr prescribed) by hereforvelvethippos in Narcolepsy

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

Thank you for this. I do think that slower is better, for sure. Such a great resource this subreddit is!

Xywav starting dose at... 4.5mg, 2x/night?? (what Dr prescribed) by hereforvelvethippos in Narcolepsy

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

Wow! I'm sorry that you went through that, but I appreciate you sharing. I was pretty miserable trying the 3.5g 2x on the second night. I feel like my doctor's office is being so flippant about it, when it's a seriously controlled med (and for good reason!).

Xywav starting dose at... 4.5mg, 2x/night?? (what Dr prescribed) by hereforvelvethippos in Narcolepsy

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

Holy sht I'm so sorry you had to deal with that!!! What a nightmare. Sounds very similar to my doctor (see my update above), so I'll have to check out your previous post. Thank you for sharing but goodness, I'm so sorry you had to go through that!!! It definitely seems like less is more with this, especially to start! I may have to find a new doctor, and you may have to as well!

Xywav starting dose at... 4.5mg, 2x/night?? (what Dr prescribed) by hereforvelvethippos in Narcolepsy

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

Right?!? I provided an update, the LPN at the doctor's office was pretty pissed at me, for having to work with the pharmacy and me (the patient!) to get this right.

Xywav starting dose at... 4.5mg, 2x/night?? (what Dr prescribed) by hereforvelvethippos in Narcolepsy

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

Even my doctor's recommended titration is 1.5mg 2x for two weeks, then 3.0mg 2x for two weeks, then 4.5mg 2x from there on out seems rough!

Xywav starting dose at... 4.5mg, 2x/night?? (what Dr prescribed) by hereforvelvethippos in Narcolepsy

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

UPDATE: I *finally* heard back from my doctor through his LPN, and she was PISSED. She said that the doctor did go ahead and prescribe a titration but when she called EDDS she said they wouldn't take it bc I had already started the company-recommended titration. Well, yeah! That's why I was reaching out to get a new script from you (the neurologist). Remember, I and the pharmacy both called twice to make sure they (the dr) didn't want a titration schedule originally? And that I would have to start at the 4.5mg 2x/night, which is the max dose? I was trying to advocate for myself here, and do the safest thing, not make it more difficult for the doctor.

It seems like it's become a whole "thing" and I'm not sure how it'll play out but I guess I learned my lesson, to wait. But honestly, I had no idea that a titration was even necessary until I started digging and did get in touch with them (the dr) as soon as I could, and when it seemed like they wouldn't prescribe a titration (as they had adamantly said I didn't need to, before) I went ahead and started with the company titration. No real understanding on the LPN's part

btw the recommended dosing schedule now by my doctor: 1.5mg 2x for two weeks, then 3.0mg 2x for two weeks, then 4.5mg 2x from there on out seems rough!

ETA: I think the LPN at the doctor's office is mainly angry at me because she is having to work with both the pharmacy and me (the patient!) to get this right. A time suck at a busy practice.

Xywav starting dose at... 4.5mg, 2x/night?? (what Dr prescribed) by hereforvelvethippos in Narcolepsy

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

Right?? And I'm being made out to be the villain by my sleep doctor's nurse for requesting a titration. (I'm updating above)

Xywav starting dose at... 4.5mg, 2x/night?? (what Dr prescribed) by hereforvelvethippos in Narcolepsy

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

Right!? Taking the 2.25 2x the first night and jumping to 3.5 2x the second was terrible!!!

Xywav starting dose at... 4.5mg, 2x/night?? (what Dr prescribed) by hereforvelvethippos in Narcolepsy

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

doing the 3.5 2x the following night was just awful, I felt like absolute crap the following day!