• This topic has 17 replies, 8 voices, and was last updated 5 months, 1 week ago by mahuba3. This post has been viewed 3167 times
Viewing 15 posts - 1 through 15 (of 18 total)
  • Author
    Posts
  • #2995
    AvatariDaniels7
    Participant

    Hi everyone!
    My insurance FINALLY approved xyrem! I have 1 full bottle (left over from the temporary trial) and I’m about to start it again while the upcoming supply comes.
    I actually really need it because in 1 week I have a BIG test (cost to take it is $1400) and I must make sure I’m awake this time (I failed it last year after falling asleep 5 times during the test).
    The test is the reason I stacked the xyrem when I learned the insurance was giving trouble to approve it.
    Anyway, I’m having trouble starting it again because of the salty taste. Diluting 2.25g in the bottle they give is easy and I can handle that much. I still get nauseous but I can take it. But jumping to 3g is a different beast. I cannot do it. When I was on xyrem before I got to 4.5g and that made me feel super nauseous, but I could take it.
    But I guess now my body sort of knows what’s coming and even at the thought of xyrem I get nauseous. It is a huge struggle to take it, and I’m still on 2.25g…
    My question is, can I dilute the 3g in two or three times the amount of water suggested? Like can I go with 1.5g in the supplied bottle and take that twice per dose to make it a total of 3g? And of course later on do the same for the second dose?
    I want to take xyrem. Badly. I HATE adderall. And I love how I feel with xyrem (minus the nausea).
    Will this mess up my body’s absorption rate?
    I’ve already tried diluting it in koolaid or clight or other powdered drinks but honestly those are also full of sodium so it really just made it all much worse! Plus the sweet and salty taste just really put me to sleep with the worse aftertaste ever.
    Seriously, any and all suggestions are welcome. Thanks!

    #3006
    AvatarHaven
    Participant

    iDaniels7, I can only speak from my experience, not from actually knowing medically whether you should dilute or not.

    When I was taking Xyrem I couldn’t deal with the salty taste either. I used to drink the dose, then wash it down with another few ounces of water. I didn’t notice any difference in the time it took for the medicine to work or the duration/quality of sleep.

    There may be others who can comment from a medical point of view. Good luck! That salty taste really is something…

    #3009
    TheRabbitKingTheRabbitKing
    Keymaster

    I always heard it was ok to drink as much water as you want during the xyrem fasting, so I imagine it’d be fine, since it’s functionally the same. I’d still recommend checking with a doc to make absolutely sure.

    My current jam: Anathema - Springfield

    #3013
    AvatariDaniels7
    Participant

    Thanks guys! Well… I’ve been doing some research. I am a doctor myself (MD), but xyrem is something I honestly only learned about when it was prescribed to me. And after comenting with other colleagues, they also never heard of it before. Odd…
    Anyway, I tried to look for the source of how they decided to add “x” level of salt to xyrem. I know it is to discourage misuse and such, but if I find why that amount of salt was added, and whether it affects xyrem, and whether the concentration affects the absorption, it would be perfect. But no answer yet.
    However, I did learn that xyrem is usually absorbed in 30-90minutes… whether it is 2.25g or 4.5g. I also learned that the 4.5g is absorbed faster.
    Which got me thinking if the faster absorption of 4.5g may be due to the higher concentration. Technically Both are diluted in 60ml, but 4.5g would therefore be twice as concentrated as 2.5g!
    I mean, when you take it by their guidelines, you change BOTH the dose AND the concentration… so I now doubt that it matters so much. I guess if I were to take it in a gallon of water rather than 60ml, likely then it would make a difference. But I’d never drink a gallon of water anyway… haha. I think part of the reason they go with 60ml is that you’ll be less likely to need to urinate at night with such little volume intake, therefore less likely to have bed wetting as a “side effect”…
    Then I decided to see how fast water is absorbed in the human GI tract. Given that water is the diluter, I asume the rate of absorption of water would therefore affect the rate of absorption of xyrem. So I found that water is normally absorbed quite quickly. If you drink 300ml of water, half of that will be absorbed in less than 15 minutes. The full 300ml will be absorbed in 75-120 minutes. So even if I take the 4.5g in three sets of 1.5g of xyrem in 60ml of water (which is even less than my 2.25g so hopefully not salty at all), I’d be taking 180ml of water… which should be absorbed rather quickly, and as such not affect the xyrem absorption at all…
    So… I’m going to give it a try! I’m still up titrating from 2.25g, I will go to 3g tomorrow… since I’ve been on 4.5g before my doctor said I can up titrate quickly, so my dose is getting increased every 3 days… I hope to be right in my assumptions and be able to stay on xyrem with no nausea or salty taste…
    I will keep you updated!

    #3018
    TheRabbitKingTheRabbitKing
    Keymaster

    Thanks guys! Well… I’ve been doing some research. I am a doctor myself (MD), but xyrem is something I honestly only learned about when it was prescribed to me. And after comenting with other colleagues, they also never heard of it before. Odd…

    This is a story I’ve heard time and again from MDs with N. I think central hypersomnias in general must be under-represented in medical training. Which doesn’t super surprise me, as most of the stuff we know about N has only been discovered in the last 20 years or so. That watershed Orexin paper was only back in 1998.

    My current jam: Anathema - Springfield

    #3029
    AvatarNatdoc
    Participant

    TheRabbitKing
    I am pretty sure that sleep medicine is mentioned very little in medical school unless things have changed greatly. I can tell you for absolute certain it is never mentioned in Nursing curriculums or advanced practice curriculums. I have many colleagues who have recently graduated and they do not know the slightest thing regarding sleep.
    With this being such an important part of overall health one would think it would at least make it’s way into a lecture or two.

    #3032
    TheRabbitKingTheRabbitKing
    Keymaster

    Engineering is the same way as far as lagging behind the times. Computer Networking is still only an afterthought in the Computer Engineering curriculum for example, despite the fact the internet has been a thing for almost 3 decades, and every home has a router in it. The problem in higher ed is the curriculae are designed by career academics that have been out of the field for prolly 3+ decades.

    My current jam: Anathema - Springfield

    #3043
    AvatarJesse
    Participant

    Dilution of Xyrem really shouldn’t change the absorption rates as long as it is not a ton of water. Regardless of how water is absorbed I think the main thing to keep in mind is the how the drug breaks down in water.

    If you look at the chemical structure of Xyrem, the Sodium is held on extremely weakly to an Oxygen.

    So when you add water to it, the Na freely dissociates since it is extremely soluble in water (thinking back to solubility rules in chemistry). So that means that bond (1 double bond and 1 single bond) with the 2 Oxygens is going to be bouncing back and forth due to the electrons being drawn by how electronegative oxygen is. Since water will be a “base” in this instance they will exchange a Hydrogen to try to stabilize Xyrem. Adding that Hydrogen will make it more stable and harder to “break down” into its active metabolite of GHB which will then make its onset time to take longer.

    Unfortunately, the salty taste is something you can’t really work around other than dilution since its just how the drug is made. The only work around maybe to dilute it to what is recommended then just shooting it past your tongue with an oral syringe and using a chaser.

    Attachments:
    #3046
    TheRabbitKingTheRabbitKing
    Keymaster

    I thought salts had to have an ionic bond. Shows what I know 😛 . I’ve had a few naps since Organic 1, haha

    My current jam: Anathema - Springfield

    #3144
    AvatariDaniels7
    Participant

    Well, thank you all for your helpful comments!
    I tried my diluting bit… but it isn’t working. I mean for the nausea. I still get the xyrem effect, but the nausea if anything, has been effectively potentiated.
    I’m really frustrated now. I think it’s psychological to a big extent though. Like just thinking about xyrem makes me super nauseous. Honestly, I diluted 1.25g in 60ml, which is nothing, and frankly the taste is barely there… but I can taste it. And it kills me!
    I’ve tried gulping it quickly, using cold water, using a straw to the very back of my tongue, chasing it with sugar-free drinks… but NOTHING does the trick.
    I don’t know what to do. I really want to take xyrem. I love how awake I feel on it. Nothing has given me this feeling before… it’s like I touched heaven with my hands and now I can’t adjust to not having it but having it also means being miserably nauseous.
    I’m getting stomach problems too, and loose stools. So as much as I want to bite the bullet and continue, my body is acting up enough that I can’t actually go through with swallowing the xyrem.
    At this point, even the thought of water alone is nauseating! And no, I’m not pregnant. And yes, I did test myself -twice.
    Any advice…?

    #3152
    TheRabbitKingTheRabbitKing
    Keymaster

    Hmm, sure you’re not having a separate digestive issue? Even if you’re sure it’s the X, might still be worth seeing a GI to see if they have any strategies to suggest. It sucks when you find a good med, but the side effects get intolerable.

    My current jam: Anathema - Springfield

    #3161
    AvatarNatdoc
    Participant

    iDaniels7
    You may try ingesting a little more fats, tomatoes or something acidic for your evening neal. The idea is to put a coating on your tongue prior to taking your xyrem, or you may try lime with the xyrem. This has worked for some folks
    I wish you good luck

    #3248
    AvatarJesse
    Participant

    If you are having the GI issues, you may be able to treat the symptoms just to see if it will become tolerable then. It really depends on exactly what symptoms/adverse reactions you are having.

    Are you taking any other medications? Could it be a possible drug interaction or some other underlying issue like TheRabbitKing said?

    #3262
    AvatariDaniels7
    Participant

    Well… I did have H. Pylori gastritis in the past but it was fully treated. I am on no other medications aside from xyrem.
    I will give a try to the fatty foods or tomato idea… and the lime.
    I think it is the sodium though. On Friday, which was my worse day by far, my mouth was SUPER dry. Almost like my tongue was paper-dry.
    I stopped xyrem because of that. I spoke with my doc who said to just go back down to 3g twice per night until my body tolerates it.
    I will be trying it again tonight. No xyrem sucks. Today I feel like I’m dragging my legs and constantly fighting my eyes not to shut.
    Xyrem said sometimes antinausea medications are prescribed, so I’m wondering if that’s where I’ll end up.

    #3271
    TheRabbitKingTheRabbitKing
    Keymaster

    Yeah, I understand your hesitance. No one wants to take meds for their meds, and I’m sure as a doctor you’ve seen that spiral before. Hopefully, it won’t come to that. Have you tried meclazine? It’s my go to for stomach bug nausea.

    My current jam: Anathema - Springfield

Viewing 15 posts - 1 through 15 (of 18 total)
  • You must be logged in to reply to this topic.