Xyrem to treat narcolepsy without cataplexy

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  • #6081

    le_saucisson_masque
    Participant @le_saucisson_masque

    Hey fellow narcoleptic comrades,

    I would like to get some feedback from those who got the opportunity to get xyrem (GHB) to treat their narcolepsy.

    In France, this drug is only used to treat cataplexy induced by narcolpesy but it looks like that it could be very potent to also treat narcolepsy by increasing deep sleep level.

    Any personnal experience with this drug would be much appreciated.

    #6087

    Anonymous

    The United States is the only country in the world where Xyrem is approved to treat narcolepsy. In every other country like mine (Canada), and yours (France) it is approved for CATAPLEXY ONLY. The reason is Xyrem has very little effect on EDS in Narcolepsy.

    In Italy Xyrem is approved to treat alcoholism, in very low doses though. There, it’s called ALCOVER.

    You may see some improvement in your EDS with Xyrem, but it is negligible. The clinical studies proved that, and JAZZ did them.

    Xyrem has a small effect on EDS, and because in the States it’s all for profit, they managed to convince the FDA.

    When Xyrem was submitted to the FDA, the vote was.

    Is Xyrem sufficiently effective on EDS?
    Doctors who voted yes: ZERO
    Doctors who voted no: NINE

    No doctor thought it helped EDS enough to justify its use — 2 points on ESS on average. That’s chicken feed

    When cataplexy was considered, the vote was
    YES: FIVE
    NO: FOUR

    Xyrem almost lost on cataplexy too.

    On Fibromyalgia, it LOST.

    Health Canada approved it but with great reluctance, and only for ragdoll fall down the stairs cataplexy.

    Those who say it was a game changer usually fall apart on cross-examination.

    The deep sleep it creates is FAKE because it does not alter the drive for deep sleep in normal controls who were tested. It increases what looks like Stage 3, producing more than is needed. So, in non-narcos, they don’t have a sleep deficit, but surplus, while on Xyrem, right?

    Well, it didn’t pan out that way. Stage 3 did not decline when X was stopped. The body does not recognize it as natural Stage 3. ONLY DIPRIVAN registers at natural Stage 3 with the CNS.

    Diprivan is IV Propofol. It brings REM to absolute ZERO, but produces the best sleep possible. But without REM, you die.

    #6088

    Anonymous

    And I have N1 — Xyrem helped a little with the EDS.

    If a stimulant was a 10 on EDS, Xyrem would be a 1.

    I don’t think the ones who say it gave them a new life have the same kind of narcolepsy most have. For one thing, Hypocretin 2 was never measurable as it is not in the CSF, only Hypocretin 1 is.

    #6099

    le_saucisson_masque
    Participant @le_saucisson_masque

    Well, the least i can say is that it’s very interesting.
    I didn’t except such negativ review, especially after seeing all the comment on different forum/reddit praising this drug.

    You seem to have experienced a bit with narcolepsy, may i ask you what you stimulant you found to be the most usefull ?

    On the other hand, i have managed to sneak a bottle of xyrem out thanks to a pharmacist friend.
    Not that i don’t believe you but i’m still going to try 4g xyrem at sleep time and 4g 4hrs later for a few days/weeks (?) and report on this thread the outcome.

    #6113
    Ferret
    Ferret
    Participant @ferret

    For some people Xyrem works, for others it’s a nightmare. I’m sorry that I can’t give you links because most of the comments were written on the now defunct Narcolepsy Network forum.
    And, fwiw, IdiopathicHypersomniac and Mark O. Leptic are one and the same. Nothing works for him.
    Any med should be very well researched and given the time to work. It doesn’t usually happen in a few days or even a week…xyrem can take months if you can stick through some of the side effects that long. It’s a process that you will work through slowly and systematically. There is no one magic pill. It’s a combination of lifestyle changes and meds and, when something helps, you’ll recognize it and incorporate it into YOUR life.
    We are all unique with unique brain chemistry and body chemistry. One size does not fit all.

    #6130

    Anonymous

    Lisdexamfetamine Dimesylate combined with a sub-therapeutic low dose of racemic zopiclone. Zopiclone is a cyclopyrrolonic.

    You could go to jail for that. Xyrem has killed MANY MANY patients, even when taken as directed. Don’t mess with it unless it has been legally prescribed to you and you have been tested on it for central apnea, respiratory depression.

    For most, XYREM is unsatisfactory on EDS. The attrition rate is very high. It has alot of AEs reported against it. It is not a med to take lightly.

    It was approved for intractible cataplexy (severe C).

    #6132

    le_saucisson_masque
    Participant @le_saucisson_masque

    well, i’d like actually to have a doctor make me do test before taking it but as you know it’s not prescribed unless you have cataplexy (which i fortunately doesnt have) so i am never going to get any serious medical attention.

    I took 4 gram yesterday at night and clearly, it made me sleep good.
    i got only 4 hours of sleep but feel as good as when i sleep the double.

    #6141

    Anonymous

    You’re putting words in my mouth Ferret, again. Go take a happy pill It’s you.

    Nobody, no narcoleptic has ever become asymptomatic. Helps is a heck of a different thing than works or normalizes, or makes me asymptomatic 24/7.

    You’re just jealous because I know more … so what. It doesn’t help.

    You don’t function at 100% and neither do I. You don’t even remember what normal is. I’m late onset and I do. At least I am honest about it.

    I run into Ns who say they are doing so well. They are not. It’s a new normal for them that isn’t normal.

    You shouldn’t compare your situation to mine, because let me tell you, when you’re willing to flirt with Xyrem and the idea of death, and you’re OK with that risk, then it must be pretty bad.

    When you get densensitization over time, nothing will work to the extent it did before. This is a serious illness that must not be trivialized by those under no treatment, or whose doctors have not explored all treatments.

    Narcoleptics are sometimes their worst enemies.

    #6142

    Anonymous

    Xyrem has been proven to be neurotoxic Ferret even though it is not synthetic. Drugs are approved based on small test samples. So what, you’re never even taken it. I challenge you to take it, walk around because nothing is happening, and then fall over like somebody chopped down a tree. Knees didn’t even bend. Almost broke my face.

    Then you see it really is a smoke and mirrors effect and you realize Xyrem is not a drug that heals. I cannot see how anybody could take that for their entire life, whereas we do have people who took Dexedrine for 40 years with no ill effects, but that isn’t going to be the case with most who take it.

    #6143

    Anonymous

    My review was not negative. It was what they found in an attempt to determine what Xyrem does. Without REM you will die. That’s not negative. It doesn’t produce deep sleep that the body absorbs as deep sleep. This is a known fact. It was not approved for EDS initially. That required arm twisting at the FDA. It is dangerous for some, harmless for others.

    Only Stanford uses it as first line, every other place and the rest of the world, it is last resort.

    #6154
    Ferret
    Ferret
    Participant @ferret

    I am medicated thank you. They are just not prescribed by a physician. And yes, I’d have to be at death’s door to even think about trying Xyrem… nor could I afford it. You throw around the names of drugs with the assumption that they are available to everyone in every country… nor are they even sure of WHAT works for WHOM.
    I repeat… it’s a process and takes time and patience to figure out what gives you your best functionality. One.thing.at.a.time.
    I take a 3 hour nap every afternoon. Works for me. But it may or may not work for others.

    well, i’d like actually to have a doctor make me do test before taking it but as you know it’s not prescribed unless you have cataplexy (which i fortunately doesnt have) so i am never going to get any serious medical attention.

    I took 4 gram yesterday at night and clearly, it made me sleep good.
    i got only 4 hours of sleep but feel as good as when i sleep the double.

    @le_saucisson_masque , You are worrying me. That is not how Xyrem is supposed to be taken. Nor should it be taken without first checking to see if you have sleep apnea. Also be aware that if you do go for a sleep study that you will have to discontinue meds that you are on (including nicotine or cannabis) unless your Doctor says otherwise. A clean study is preferred.
    Now the next post from IH/Mark will detail how ridiculous the psg/mslt is and, although I agree with him, that’s the standard that we’re stuck with at the moment. C’est la vie.

    #6164

    Anonymous

    I agree Ferret … that person is playing with fire. You steal oxybate … you go to jail. Are these people patz?

    The PSG is only good at detecting apnea, and that’s it. There is no pattern anywhere else. MSLT is performance anxiety. Fatigue does not factor into it.

    The two who came up with MSLT were total idiots.

    They are trying to assign absolutes. In relativity, there are none. It is all relative to a frame of reference. Two observers won’t see the same thing. Because doctors don’t have a background in physics they cannot see how stupid a cutoff like that is. MSLT from Dr. Dement and what’s her face who didn’t even do a proper population based study of sufficient size.

    Then they give me a survey that looks like it came out of a rate your husband score. If your total is 15 divorce, 14 stay married, when all the questions could have gone one way or the other by a single point.

    Those dong dings at Stanford never gave an MSLT back to back — two of ’em. If hey had done that, they’d see I’m narco on Wednesday, and IH on Thursday.

    You can measure something as 20 cm, and I will measure it as 15 cm, because we are moving at different speeds. Same thing.

    MSLT means, “we think you are faking”. Doctors need to fucking listen to patients and believe them, and not think they are all wingnuts.

    #6182

    Anonymous

    Psychomotor vigilance testing @Ferret — how does this website work? They did that with Anna.

    Pupilometry is better than MSLT. MSLT and ESS belong in the trash. Clinical. Or, polygraph/lie detector … are you sleepy? She’s lying.

    YOU NEVER SELF MEDICATE. DOCTORS ARE NOT EVEN ALLOWED TO TREAT THEMSELVES.
    SEE A DOCTOR. THERE’S NO REASON NOT TO.

    #6402

    Anonymous

    Are you afraid of doctors? Why self-medicate?

    #7915
    narcovolfan
    narcovolfan
    Participant @narcovolfan

    Let me just give my experience. I have narcolepsy without cataplexy. I’ve been taking a prescription of Xyrem at 6.0 mg a night (3.0 twice a night) for several years. I don’t know the science of clinical data behind it but it has been a game changer for me personally. I’m significantly less sleepy than before (ie sleepy or tired but not so much I’m falling asleep driving or in meetings or random other times anymore). However, it’s not perfect by any means. And self-prescribing is dangerous on this drug, period. I had all the tests done and continue to be followed by my doctor. I tried Nuvigil first but was allergic. I take adderall sometimes to help but not always. You should never take Xyrem unless you are in bed and ready for sleep. You shouldn’t be walking around after taking it. It has a relatively short half life so wears off after about 4 hours or so. I know not everyone likes Xyrem but for me I can actually function again with a lot less falling asleep doing just about everything. You also have to be really careful about mixing other drugs or alcohol on Xyrem, it is again, very risky. But other than it making my nauseous the first week I’ve had no other issues. But I cannot stress enough that taking Xyrem unprescribed and without the right steps for your health and safety are really risky.

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