heysawbones

[heysawbones]

The other day, my (former) therapist acted surprised when I told him I had ADHD. It hadn’t ever come up in therapy, see. I didn’t *seem* like a person with ADHD, see.

It’s just hard to explain inattentive-type presentation to people who aren’t already familiar with it. Being on Xyrem and Adderall have helped a ton with executive function - I can actually plan out my week in a notebook now! I’ve been doing it for two months! The notebook has to be line of sight, though. I never close it, either. It’s always open to that week’s tasks. If I can’t see it, it might as well not exist. If it’s there, but closed, it might not organically occur to me that this is the schedule book and that I should open and check it. This explanation didn’t help my (former) therapist at all.

This morning, I had an early appointment. A phone notification alerted me to it, just in time. I get to the appointment. It’s fine. I leave. I get to the pharmacy. I do not have my walletphone. Ah! Good old Tish. It’s back at the doctor’s office. I go back to the hospital, where my original parking spot is still vacant. I get the walletphone. I go back to the pharmacy. I get my meds.

The appointment was for my meds. I’ve been on desvenlafaxine since probably 2011. Had a 3 month supply. Lost the third month’s supply somehow, and needed doctor approval for the pharmacy to refill early. ADHD’d my walletphone at the appointment I only had because I have ADHD. No idea how I lost the meds. When my uh, brain more normal friends misplace their phones or wallets, it ruins their whole day. I forget mine all the fucking time and have to just get on with it. That’s just Monday for me. I know that if I tried to explain this to my (former) therapist, he’d say “everyone has days like that, sometimes”.

I, not being that invested in explaining or justifying myself, would just sigh.

“Yeah. Yeah, they do.”

#blah blah blah

[heysawbones]

She’s right, but then people got upset because telling people not to “feed the trolls” is victim blaming. And, I mean technically, it is. It’s still great advice, though. Is it universally applicable? No. Is it usually applicable? Yes! You can even get out of small dogpiles this way. One time a bunch of randos on Twitter flipped shit because they misunderstood something I said. Damn near 50 accusatory comments from people I’d never run across. I ignored them. It stopped in two days. It was rad.

That isn’t to say I always follow the advice. Sometimes it’s fun to piss into an ocean of piss. That’s something you gotta know about yourself and take responsibility for.

Sometimes we could all use a reminder. (source)

[heysawbones]

some dynamic studies of Fred Astaire

(bottom right corner is reference to this,

which manifests in my head whenever I see Fred Astaire)

[heysawbones]

Let's Talk about Xyrem.

Xyrem ("oral sodium oxybate" or the sodium salt of gamma-hydroxybutyrate) is used in the treatment of narcolepsy, as well as (sometimes) idiopathic hypersomnia. Even if you don't have narcolepsy or any related conditions, you may find this run-down interesting. Here's why:

Gamma-hydroxybutyrate is roofies. That's right. Date rape drug. Right here.

The drug is so tightly controlled that there is one pharmacy in all of the United States that can fill it. Doctors must be approved and participate in a special program to even prescribe it.

Nobody really knows how it works in the treatment of narcolepsy.

I was prescribed Xyrem quite some time ago - at this point, nearly a year back. It took six-plus months of insurance, doctor's office, and central pharmacy wrangling to get the drug to my door. The whole time, I wondered: what should I expect from Xyrem? How do I know if it's working? How do I know if it's not working? What's it like? Lists of side effects and contraindications are readily available online, but I couldn't find a single detailed testimonial. This bothered me.

I've been on Xyrem for about a month and a half now. Here's what I can tell you about it.

You have to wake up at night to take a drug that's meant to improve your sleep. Everybody I explained this to found it funny. The standard practice is to split your dose in two - to take one half at bed, and the other half two to four hours later. If you're on Jazz Pharmaceuticals brand Xyrem and not the generic, they send you a tiny little alarm clock with a light on it to facilitate this. I have never needed it.

It takes 3 weeks to titrate up to the "full" dose, which is also the maximum dose. From there, you can titrate back down to a lower dose if you're experiencing unpleasant side effects. I'm in the process of doing this myself.

It doesn't necessarily knock you out. From the way the drug is described, one might get the impression that the moment it kicks in, you're going to be unconscious. I didn't find this to be the case. Your mileage may vary; I don't always fall asleep at all on the first dose, but it does at least get me sleepy enough to fall asleep on the second.

You have an unusual amount of agency in how you take Xyrem. This surprised me, especially given how tightly controlled possession of this drug is. For example, I metabolize Xyrem really fast. If I take it in two doses, I will sleep a maximum of 6 hours. I take the same amount of medicine and split it into three doses instead to compensate for how fast I metabolize it. That way, I'm more likely to sleep about 8 hours. This isn't just accepted, it's encouraged. You can even take a bigger dose first and a smaller one second, or vice-versa. The only hard and fast rule is: do not go over the max dose.

If you take it with alcohol, or within 4-6 hours of alcohol, it could kill you. A lot of drugs warn you not to take them with alcohol. I cannot stress enough that if you have ignored that warning in the past: do not ignore it here. Do not. Xyrem is a powerful CNS depressant. Alcohol is a CNS depressant. It really can kill you.

It works(?) Like many drugs that act on the brain, nobody is really sure how Xyrem works. It doesn't affect the most common (known) cause of narcolepsy (a lack of orexin/hypocretin). It's theorized that the drug acts on GABA receptors in a way that "consolidates" the fragmented sleep architecture of narcolepsy.

Narcolepsy can be thought of as an autoimmune disorder of sleep architecture. The sleep architecture of a narcoleptic is irregular, both within itself and from night to night. People with narcolepsy tend to have less of the deep sleep stages than they should. Narcoleptics also have a high percentage of stage 1 (light) and REM sleep. It's theorized that excessive REM occurs because it is of poor quality/does not serve its intended function, so the brain spams REM in an attempt to compensate. A diagnostic trait of narcolepsy is the ability to enter REM within 8 minutes of falling asleep - if sleep architecture is normal, this does not occur. While not all people with narcolepsy have cataplexy, cataplexy itself is actually REM intrusion into waking life. The narcoleptic brain is that screwed up about REM. Xyrem appears to regulate shifts between sleep stages and reduce the nightly percentage of REM sleep. I used to dream nightly. Subjectively, I do not dream at all on Xyrem.

The only difference between Xyrem and Xywav is salt. A full 9g dose of Xyrem contains 1,640mg of sodium. The maximum sodium intake recommended by the American Heart Association is 2,300mg. One of the few things I saw said about Xyrem prior to taking it was that it was disgustingly salty. It is very, very salty. I don't mind it, though. I've seen it said that Xywav tastes much worse, but I can't attest to that.

Subjective experience

Xyrem comes Priority Air Mail in a sizable cardboard box. An adult with ID must be present to sign for it. The first month's prescription comes with a light-up alarm clock. This kit and all subsequent kits come with:

The medicine, in however many bottles are required

A number of syringes, marked with common doses

A number of pill bottles

You put water in the pill bottles. They tell you to put about 60ml, but as far as I can tell, this is to make the saltiness tolerable. I made a little game of this - I try to put the same amount of water in each pill bottle, gauged by nothing but sound. I've gotten pretty good at this. I have my nightly dose split 3 ways. After adding the drug to the water, I close each bottle and swirl it a bit. I don't know if this actually does anything.

Xyrem works best if you're already tired when you take it. Hilariously, I have ADHD in addition to narcolepsy. Nighttime sleepiness isn't a thing I Do naturally. Consequently, the first dose of Xyrem only puts me to sleep about half the time, and it takes a while even when it does. I know myself well enough to know that if I wait until I'm actually "sleep for the night" tired to take it, I might be up until 3 or 4 AM. Instead, I take the first dose at around 11 PM. Even if it doesn't put me to sleep, it DOES make me sleepy enough that the dose I take 2-3 hours later will definitely work.

I was very careful to set alarms the first week or so of taking Xyrem, but I've never needed them. For reasons that are unclear to me, I always wake up when Xyrem is fully metabolized. Without more Xyrem, there is no urge to go back to sleep. When I've run out of doses for the night, I'm up for the rest of the day. There's no napping.

Some people have pretty nasty side effects with Xyrem. Headache and nausea are the most common. I had both of those, once each. The headache lasted all day but was otherwise unremarkable; the nausea was genuinely awful. The only persistent side effect I have, is tremors.

While I was waiting for Xyrem, my sleep specialist put me on Adderall. Nobody would prescribe this for ADHD, but you'll do it for narcolepsy? Sure, whatever I'll take it. I mention this because I thought it was possible that Adderall was causing tremors. I ran a little experiment: I took Xyrem but no Adderall one day and still had tremors. I took Adderall, but no Xyrem the night before, and the tremors subsided. It's definitely the Xyrem. While this is a known possible side effect, I can't find any information on how or why Xyrem, a CNS depressant, would cause something that seems very much the opposite of a depressed central nervous system. I am currently titrating back down from the max dose in an attempt to see if a lower dose will mitigate the tremors. If that doesn't work, I'm not... entirely sure what to do. Xyrem is a weird drug. It's strange not to dream at all; it's strange to wake up twice a night and still get better sleep than I ever have. Executive function has improved considerably, given that both neurological issues that cause executive dysfunction are being treated. Still: the tremors are, I will not lie, distressing. Not as bad as they were on Wellbutrin, which I was forced to discontinue! But - disruptive and distressing, nonetheless. I'm hoping that the tremors will stop eventually, or that dose adjustment will help.

Overall: would recommend if you have narcolepsy. You wouldn't think that a drug that obligates you to wake up multiple times a night could improve your sleep! Well, bucko, if your sleep architecture is already so disordered that you have narcolepsy: it can.

#I said I'd do a writeup on xyrem and here it is #took a long time because xyrem is weird #xyrem #narcolepsy #idiopathic hypersomnia #xywav

[heysawbones]

#pardon this repost #need it real quick

[heysawbones]

when the clock is at :45 it’s like. oh i have a whole quarter of the hour left i have so much time this is great and then it hits :47 and you’re like it’s basically :50 which is basically the top of the hour and all my time is wasted forever and ever

[heysawbones]

THRILLING XYREM UPDATE!

The initial dose is too low for me, lmao. I am too experienced of a sleep-problem haver. You’re expected to fall asleep within 5-30 minutes, generally. I didn’t fall asleep until it was time for the second dose, which did knock me out.

This is a drug that has to be titrated up to its therapeutic dose, so we’ll see how that goes. I intended to do a write-up on the experience because there are too few of them out there. I wanted one before I started taking this drug. It looks like I’ll have to wait until I’m sure the drug is at a therapeutic dose, however.

#xyrem #blah blah blah

[heysawbones]

don’t worry, I will definitely be calling my doctor IMMEDIATELY if I experience serious side effects:

coma

death

#blah blah blah

[heysawbones]

bitches, and I quote, “don’t know bout my StairFridge”

#I wish that was actually a fridge #that’d be rad #restoration station

[heysawbones]

okay, THIS is a rabbit hole. wow

#Youtube

[heysawbones]

just,,,

these are murdering me

#airplanes politics #Youtube

[heysawbones]

these are murdering me

#Youtube

[heysawbones]

I present

this nuclear jet engine

"I'm fem-presenting!" "My presentation is masculine!" "I present androginously!" well I forgot there was a presentation today and it's too late to put anything together

#htre-2

[heysawbones]

NY I’ll never forget this or you. 🕴🏽🫀🕴🏽sound all the way UP! Float! 🕴🏽☁️

See you tonight Nashville!!

#I missed seeing my girl in clothes so bad #I know it’s blasphemy but I have not been feeling the Shock N Awe Tity Era #even though they are without question S class tity

[heysawbones]

My life’s p much been on hold for a year now, what with the MS diagnosis, dealing with the optic neuritis, and then insurance deciding to no longer pay for (expensive) medicine I was already doing ok on. Then, it takes almost half a year to even get the new drug in the mail. I want to say “it boggles”, but it doesn’t? At some point, a person’s just, “it sure is this way, isn’t it”

to be fair to my sleep doc, I don’t think this is strictly her fault. She works in a large office, with medical assistants serving many docs at once. From having been there and trying desperately to communicate successfully with them, I get the strong impression that it’s just. run terribly. Truly terribly. This whole process took so long that I had a follow-up about how I was doing on the medication before I’d even gotten said medication. When I told my doctor I didn’t have it and why, she was like “huh. I had no idea”.

I even started looking into whether it was possible to report doctors to the special program they have to be in to prescribe this medication, and get them kicked out. That’s not a me thing to do! I hate and resent that. I’m uncomfortable with causing professionals any trouble - I know they have enough going on. But after six months, it’s like… somebody here has to be accountable.

#blah blah blah

[heysawbones]

If I would’ve known that venting on tumblr would cause the stars to align, I would’ve done it months ago. Uh, I’ll let y’all know how Xyrem works out

#I have spent so many hours on the phone lmao #help

[heysawbones]

wild shit. WILD SHIT. complaining on tumblr summoned the drug gods and the SHIPMENT IS COMING

WOW

I confess I am bummed not to have the energy to engage socially to the degree I once did. I’ve also been waiting to receive a prescription for narcolepsy medication for six months.

Six. Months.

Six.

#WOW!!!!! #I am but a unicorn and your collective good will saved me