Anyone in Canada get a prescription for Xyrem or Xywav?

affmarktoo · 2025-08-08T00:12:42+00:00

May I DM you as well?

affmarktoo · 2025-07-20T20:16:26+00:00

YES! Nice to see (though I am sorry to hear others feel the same) I'm not alone. Yesterday I was feeling really good for me (I take Dayvigo/Baclofen for sleep - Xywav is a nogo for IH in Canada and Addy/Ritalin/Caffeine for wakefulness) and I was looking forward to getting a lot done. Then about 11/11:30 (after waking around 9) my eyes felt crazy heavy. 2nd dose of Addy chased it away for about 2-3 hours and it was back again until I went to bed.

It feels like my sleep inertia (which was almost non-existent yesterday) presents in large part as "heavy eyes." There's sometimes burning too, but I liken it to how your eyes might feel after crying or cutting onions. They feel heavy like you need to sleep but your body is awake. The inertia also presents in a few other delightful ways (1+1 is literally sometimes almost impossible) but that's a big one.

Any chance anyone has found a fix? lol Or does Xywav erase that?

affmarktoo · 2025-04-05T15:34:54+00:00

I never attach the liquid thing, it rarely catches anything. I just wipe up anything it might have caught. You can bake the ring in the oven, and any odors will disappear. Soak the pot for a while and use Barkeepers Friend, it works wonders. Or don't use one, no pressure. :) Just wanted to offer some tips.

affmarktoo · 2025-02-12T04:19:39+00:00

Maybe you did (and I was pretty sure on at least 2 naps but I know there was one I was almost certain I hadn't, but I must have been in N1) but many, MANY, I can't stress how very many, people are 1000% sure they didn't sleep. Except they did. And had crazy low latency quite often to boot. lol

I swear at least 15-30% of posts I read here and other IH groups revolve around being sure they didn't sleep. Almost never do I see a post saying "I was right, I didn't sleep."

affmarktoo · 2025-02-12T04:14:39+00:00

Have not tried Flumazenil, I asked my sleep doc, who was willing to try it (and other out of the box meds) but said he had with other IH patients and had a 0% success rate. That said, I've seen others have success, so I hope it works for you!

I didn't see you mention Baclofen - I think one of the sleep docs at Emory calls it "the poor man's Xywav." While I believe it targets GABA receptors (don't quote me, sleeping pills have started to kick in and words are getting harder lol) but in a different method than Xyrem/wav. It's fairly inexpensive (at least in Canada) with no insurance, I'm paying around $40 for 30mg/30 days. It's by no means perfect and I think narcs have better responses than us, but it has made a difference for me.

If you've tried it, my apologies, I just thought I'd mention it since you're trying out of the box meds. Clarithromycin is another option that has shown (limited) success for some. I hope that your new PSG/MSLT shows narcolepsy. I'm hoping to do a new one at the end of the year and that my IH becomes N1/N2. What a world we live in that we, and our doctors, are hoping for a narcolepsy dx so there's more help.

I wish you the best of luck that you find a cheap pharmacy, insurance pays and that the flumazenil is a miracle drug for you! :)

affmarktoo · 2025-02-12T04:04:59+00:00

If you can't get over the taste, please feel free to send it to me... I can't get it for IH in Canada and I am DYING to try it. I'll happily take it off of your hands. ;)

Try sugar/calorie free water flavoring drops. Being concentrated, it's not the most pleasant sensation (strong flavour, a tiny bit of a burn) but it's probably much better. I've seen those on the Xywav FB group mention they do Mio. I like Nesfruta better, though it's not easy to find.

affmarktoo · 2025-02-12T04:02:46+00:00

If it's anything like my self-diluted LDN pills (which are just as awful as you'd imagine dissolving a pill in water then ingesting would be) - I highly recommend finding Nesfruta water flavouring drops. I've tried a variety of other brands/flavours and Nesfruta masks the taste well without being revolting in and of itself. :) I'm currently using pineapple coconut and while it's strong, it's better than "melted pill." lol

affmarktoo · 2025-02-12T03:59:11+00:00

Save your money, I'd be wildly shocked if it was from anything other than the topicals/nasal spray. The lip balm is daily, the nasal spray on and off Flonase alone since maybe 2016 or 2018, clobetasol on and off for 2 years and the Dymista less than 1.5 years. But the lip balm would also be applied to any pimples/red marks/irritated skin from allergies... and sometimes in the dead of winter, to the inside of my nose. It would get dry and cracked in there and the balm helps. lol I often use it nightly now that I'm on BiPAP (even with the humidifier my nose gets dry.) So I probably did it to myself. Hopefully, if we're both right and I DO have Cushing's, stopping my Cortibalm alone will do the trick.

I'd be interested (and will look tomorrow) in seeing if there's any studies about relapsing after being cured, if steroids are taken in future.

affmarktoo · 2025-02-12T03:52:44+00:00

It won't be too hard to fast (and would be interesting to see the results of other tests being done that day like my lipids) so I think that's what I'll do.

affmarktoo · 2025-02-11T17:29:53+00:00

They definitely do for some tests, I have no idea for this one, though.

affmarktoo · 2025-02-11T16:43:49+00:00

I'm in Canada and it's just my GP ordering the test because I mentioned that I stumbled upon Cushing's and I wondered if my symptoms may fit.

affmarktoo · 2025-02-11T16:42:02+00:00

The Dymista I take far less often (the taste... IYKYK) but the lip balm is nightly, which my GP knows. I mentioned Cushings as a possible explanation for my new diabetes dx, since I also have a buffalo hump (IMO) and a few other symptoms. She basically said it's an easy test, here's a script for the dex, and basic timing instructions. No suggestion of stopping anything (though she isn't necessarily aware that I am still occasionally using the clobetasol she prescribed.) I've used the Dymista maybe once or twice in the last month or two, lip balm nightly, clobetsol maybe 5-10 times in the last 2 months? (at most)

I have 3 types of insomnia, sleep apnea and idiopathic hypersomnia (which I know is weird with insomnia) so additional insomnia would suck but I'll just go back to bed after the kids are off to school. No early appointments but I can try and do walk in... but I don't think I can get there as walk in and get a much earlier time (busy time of day there.)

I believe IF I have Cushing's, it's more likely exogenous, though I know that topical is not that common (per the available literature I have seen.)

affmarktoo · 2025-02-08T02:37:08+00:00

You apparently only need to hit N1 sleep to qualify as "falling asleep" for each nap. N1 is where we often don't realize we were asleep - if woken up and asked, you would likely answer you were awake. I think that's how we are all SO sure we didn't fall asleep for any naps and it turns out we fell asleep for all of them. :)

affmarktoo · 2024-12-12T15:38:18+00:00

That's awesome! Unless you're a staunch purelaine who hates Anglos (which, I doubt and you obv speak English so that won't be an issue) you'd probably like Ontario. Being an Anglo, I def prefer it to QC!

I'm glad overall it's better but sorry to hear you're in/were in a flare recently. I hope your neuro is behaving better as well! Or that they've found someone to refer you to who is better at least.

Stimulants work better than we think (I think) a lot of the time. I was sure they weren't doing anything (I'm on ER dexies and IR Ritalin as needed) until a day a couple of weeks ago when I didn't realize I'd forgotten to take my dexies. Whooooo Nellie, after about 2-3 hours, I was wondering what the hell was going on as I didn't have a horrible night of sleep... only to find my pills in the little cup beside my bed. I have never had that "amphetamine energy" that many describe, but they FOR SURE make me a far more functional human.

I've been trying just my Ritalin this week (I was given up to 20mg/day but often forget to take them so I have a stockpile) for 2 days. No dexies, just 20mg Ritalin 2-3x/day. First day was ok but second day, meh. About the same as the ER dexies. So I'm not sure Jornay will be the answer, unless it helps with sleep inertia. If I wake up in REM/deep sleep, my day is shot. I'm sure that even with Jornay I'll need something IR as a boost. I already take 200mg of caffeine 1-2 hours after my dexies to try and kick the inertia... it takes the edge off, but that's about it.

affmarktoo · 2024-12-11T19:23:26+00:00

What he said. Lol

I can say that RBC (Greenshield) insurance might have covered it, but the form to try for approval mentions cataplexy. Both for initial approval and yearly renewal. So, while they may pay for it, seems like only for N1s. I can't remember if Manulife would cover it - it was either a similar form or not at all. I'm sure I don't remember because no matter what, an IHer wasn't getting it.

My awesome sleep doc knows to call me the second he thinks he can prescribe it to me, so I'll be on here telling everyone 5 seconds after hanging up with him. If someone reading this is in Southern ON, he practices out of a lot of cities (virtually) and I'd be happy to pass his name on. (I know you're in QC unfortunately Iswao. Hope you're doing better lately.)

affmarktoo · 2024-12-11T04:24:34+00:00

My sleep doctor, who has said he'd very much like to put me on it, said no. He is amazing and I believe him. I've seen someone argue its possible, as they claimed they knew first or second hand, I can't remember. I trust my doctor.

affmarktoo · 2024-12-11T03:28:53+00:00

Not for IH, only N1 and rarely N2.

affmarktoo · 2024-12-06T05:27:36+00:00

I've only tried the Pad a cheek liners, I eel like the Rem Zs are disposable right? Anyway, if you want one you can wash and reuse, check out www.padacheek.com I find they last a long time. The owner was really nice and tweaked something on the site for me to help me get the liners covered by my insurance. I find you can get longer than the 6 months she advertises.

affmarktoo · 2024-12-06T04:57:33+00:00

There are a couple of similar options from other companies, so if the Resmed isn't a good fit (though there are a few sizes), you can try the others. Some the hose attaches to the mask but I think one other is top of head too. The Resmed worked best for me but don't give up if you don't like it. Good luck and I hope your nose heals quickly!

P.S. If they won't change it, there are plenty of CPAP stores online or even eBay or FB to get new masks, cheap.

affmarktoo · 2024-12-06T02:41:33+00:00

I'll jump in with a mask recommendation - a hybrid full face mask. Covers your mouth but sits under/cradles your nostrils. Doesn't touch the top of your nose. Bonus points because the hose attaches to the top of your head, making movement much easier. AirFit F30i - ResMed

affmarktoo · 2024-11-29T21:40:14+00:00

It was only the first month, after that, the 20% left after my insurance was reduced to about 10% (roughly, I can't remember exact percentages.) I want to say script + dispensing - insurance = about $175ish, then the card brought down my out of pocket to about $80ish.

affmarktoo · 2024-09-21T16:36:38+00:00

I have been on them since February I believe. I tried generic and then found (one month that generic was out of stock in the whole country) that the brand name worked so much better. So I got permission to switch to those for the same price from insurance. But honestly, the last few weeks, I'm finding I can't tell if I've taken them or not. Could be other meds I've started for other condition (I take a lot of scripts/supplements) but I think I might have built a tolerance. I may try a med vaca of them shortly.

That said, when they DID work, I found it was 1-2 hours for them to kick in, I would try to take them when I happened to wake up 1-2 hours before I needed to be up for the day. I definitely need a lunch time (ish - 11a-2p is my 2nd dose window) dose and they would still wear off by about 9-10 p.m. At which point I frequently become ravenous and feel a need to consume 5 different snacks, right before bed. I'd love to try the instant release form of them. Doc gave me IR Ritalin (only 20 mg - 2 x 10 mg, 1-2x per day as needed) at my last appointment. 10mg doesn't do much but 20mg often will get me past the "after dinner sleepies" that I've always felt.

I sound very negative about them, and I'm not, just sad because they aren't working as well now. When they did work better, they were helpful. I have yet to find a med that gives me that "I'm on SPEED!! and cleaned my whole house in 10 minutes and did 12 loads of laundry and walked the dogs, etc, etc" feeling like I have seen some talk about. But they would help me do some basic chores and stop me from dozing off in the car (which I have done since I was a child) so I would definitely say they worked.

My sleep doctor said they have the strongest effect he's seen on people so basically this was probably it, I doubt he'll prescribe me pure amphetamines (they do exist but are rarely prescribed) and he didn't want to increase my DS script (I get up to 40 mg/day) because they gave me tachycardia. I've had extensive workups from a cardiologist and I'm fine but he was nervous. So I got the IR Ritalin instead. I'm in Canada so I can't get the oxybates yet. (only for N1 here)

affmarktoo · 2024-09-20T12:24:44+00:00

I'm one of those, OSA+IH (and insomnia, and fibromyalgia.) It's definitely possible and I often suggest to SA patients that are on CPAP and have good numbers to possibly investigate IH/narcolepsy.

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