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Xyrem Addiction


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#21 Kathleen

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Posted 10 November 2009 - 10:59 PM

So :D to hear that you are ok, I hope you got my message. I was so worried!
Please keep up the good work, it took lots of courage to do what you had to do. I am very glad you were able to get professional help.
Congrats, keep us updated <3 ((((huggs))))

#22 Henry G

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Posted 05 December 2009 - 02:35 AM

Hi Sleepless Sleeper!

Sorry being a way for so long. Hugs {{ }} XxX

Greetings PWN in Deutschland!

Kindly forgive me however preposterous my views may seem, however even wrong they may actually be - I post my concerns anyway without a care in the world how silly I may feel later

But to raise doubt is good, specially if something is bugging me to speak up

And I always love to be proved wrong.

My knowledge of medicine is limited to personal experiences mostly. I have no M.A.D // Still I hold firmly with my previous theory.

And if I should step-through the rationale behind it (unwillingly, since I am cautiously aware of human thought biases and fallacies) ok then here they are:

* Anti-depressants are prescribed to tackle Cataplexy (source: wikipedia)
* Xyrem "seems" to be effective in reducing Cataplexy over other anti-depressants (source: who knows, also this)
* Xyrem started of a cataplexy reducing agent (source: wikipedia references)
* Xyrem then was argued to also induced deep sleep (source)
* Xyrem is a potent Hypnotic (search for keyword: 'hypnotic' here)

* Hypnotics induce deep sleep (ok trivial)
* Hypnotics are not effective in the long term (wiki)
* Hypnotics can be highly addictive / tolerance building (more personal experience, other people's account + wiki)
* By increasing the user base of Xyrem, Jazz Pharma gets more $ (ok obvious)

* Doctors are then encouraged to make Xyrem the panacea for all Narcoleptics (including those without Cataplexy)
* But doctors like my own from Brazil, appeared to have reservations against the idea (on asking if i could "try" - he replied: "But you don't have Cataplexy")

* I never read a post about a Cataplexic patient complaining about spiralling out of control over Xyrem (but then I could have missed!)

* But I have read or spoken to people spiralling out of control over hypnotics (such as Ambien, and such as myself)
* Yours is the first account I read against Xyrem.

Which led me to conclude that:

* Xyrem works best and safer as a long term anti-cataplexy agent for those suffering from the condition.
* But less so and less safe as a short-term hypnotic for those that don't have Cataplexy.

* Xyrem should NOT be used as a sleeping pill ever.
* It is an anti-depressant for Cataplexy ; whatever the Marketting Deparment of Jazz Pharma agenda's lie

* As more and more doctors push Xyrem for non-Cataplexy patients we could start seeing others spiralling out of control also, and that would be unfair and sad !

* It took me 4 years to spiral out of control over Ambien/Zolpidem

* So it may take a while for us to hear similar stories such as yours. The time-bomb is ticking.

Please understand my motive is *not* to prove I am right or someone else wrong.

As a matter of fact, I pray to God - I am ever so wrong.

I don't fear ridicule if I am proved wrong. I love it.

But I feel somewhat of a duty to raise my alarm and suspicions specially if other people's safety is a stake.

While some may have great faith in modern science, doctors and pharmaceuticals as gospel, I clearly do not.

I've accidentally overdosed on Ambien / Zolpidem. On two separate occasions. I slept walked munched all the pills in an euphoric trance - ended up on an ambulance.

It took me 4 years to finally reach that tipping point.

But imagine if that had happened with XYREM? - I clearly wouldn't be here alive today .. typing this - Death threshold is ever so low with XYREM ... 2 or 3 drops extra is all it takes.

#23 jado

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Posted 08 December 2009 - 12:44 PM

I have been on xyrem for 4 years now. i started at 3g total dose for a night. i can't for the life of me figure out how and/or when it happened, but i have slowly progressed to 20g per night and it no longer helps the daytime sleepiness. I had a chem friend read over the drug info today and he told me that addiction can occur when you take more than 9g per night on a reg basis. I start around 11p with 5g, and then I wake up every 2 hours like clockwork (no alarm) for my next dose. anything less than 3g does nothing, so i end up taking 3g at 1a, 3a, 5a, 7a, and 9a to get my full 12 hours in.

i know that i am sleeping way too much and should quit with the 7a dose, but i frequently get up and mix up more and sleep until 3 or 4 in the afternoon because i love being asleep. in classic addict terms, i always want more. i don't feel like i need more, i just want more. i have tried taking drug holidays. after i get through the first 3 days of insomnia (yes, insomnia for the narcoleptic which equals hypnogogic hallucinations fairly constanly from about half way through day 1 until my body withdraws from the xyrem and i pass out), i can't do anything but sleep. i have gone as long as a week w/o it before i gave up and went back.

i used to have a job, but I am now a housewife living in germany with no kids and no job. my only responsibilites include cleaning house, grocery shopping, and cooking; this leaves me with endless hours to enjoy the dreamy bliss of a xyrem haze. i have gotten to the point where i have to try to figure out how to compensate for my end of supply (b/c i always run out before i can get more) and i take sleeping pills (tylenol pm or benadryl) with the X to try to make it last longer. I am at the max script of 15g prescribed per night, which helps to feed my habit. I don't want to discuss it with my doc because i don't want him to take it away. it is no longer doing anything for the daytime sleepiness, so he added nuvigil, which of course increases my need of the xyrem to help me sleep at night. i know that all of this is making my N that much worse, but i have kinda given up on anything ever working to make me feel normal... and i admit that i have an addiction (first step accomplished, wouldn't mom be proud) but the addiction makes it REALLY REALLY REALLY hard to want to do anything about it.

let me be very clear that all of this comes from having very serious N. in my daytime study i fell asleep 5 out of 5 naps and reached rem sleep in under a minute for the first four, and within 5 min for the last. my life has become complete hell. before my diagnosis, a trip to the grocery store would knock me out for the weekend and i was falling asleep at work while interviewing job candidates. after all the meds i have tried and all the years (diagnosed in 2004) of hoping that anything would give me even 5 minutes of peace where the heavy black cloud that i constantly feel behind my eyes and forhead would lift, but i know now that it's not coming. so i give up and just sleep.

is there anyone out there that gets what i am saying? am i totally alone in my self-induced and self-perpetuating circle? how long do i need to be off the xyrem before my body and brain will lower tolerance?

it is 12:54 am where i am and i took 3g and 11:30p. i am typing while enjoying a feeling similar to being stoned, but xyrem is a significantly more expensive addiction than pot! please do not reply with any fluffy kitten and hugs advice like be strong and tell the doc, or god will give me strength, or i should focus on all the good things in life. all realistic and grounded advice is extremely welcome and will be strongly considered. N sux, the treatments suck, the public opinion of it sux, no one i know understands me, and xyrem gives me bliss... addiction sux.



#24 jado

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Posted 08 December 2009 - 02:19 PM

Has anyone ever read Trinka Porrotta's "G'd Up 24/7". It is THE GHB/Xyrem addiction guide. You can see it at www.projectghb.org. I know copies have been distributed world-wide. Roger

#25 eww

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Posted 12 December 2009 - 08:52 AM

Hm. I have to say that I believe HenryG is on the right track.

I think a major reason that it's tricky finding other Narcoleptics who have had Xyrem addiction problems stems from the basic neurochemistry involved.

Narcolepsy (with Cataplexy) is known to be caused by a malfunction in the Hypocretin/Orexin system in the hypothalamus. The exact nature of the malfunction is disputed. If I'm not mistaken, Narcoleptic dogs have been shown to have normal levels of Orexin in their CSF (cerebrospinal fluid) and the problem there seems to be with receptors. In people, research has found low to non-existent levels of Orexin in CSF. Keep in mind that the population researched is very strictly "classical" in terms of symptoms hence the "(with cataplexy)" earlier, so the orexin levels in non-classical cases are unknown and the malfunction may be caused by another mechanism in those people.

[Edit: Orexin is a neurotransmitter (chemical in your brain that cells use to communicate and ultimately influences behaviour). Actually it's a neuropeptitde which just means that it's a short protein strand that does the same basic thing.]



This is important because when you consider the various other roles of orexin in the body you get an oddly familiar picture. It is implicated in modulating feeding behaviour (nighttime munchies anyone? or after-meal naps?) as well as addiction. The information is relatively new but it is generally convincing that orexin plays an important role in addiction. This would also make sense given the history of Narcolepsy treatment. Moderate to highly addictive medications have been used in fairly high quantities (in comparison to other medical uses) for years but the rate of addiction among Narcolepsy patients is incredibly low.


So. I'm thinking that there could be several things at play here. First of all, if you aren't considered a "classical case" of Narcolepsy, then your ideal treatment plan may very well be different than someone who is.

The other thing may be controversial but here goes... You love sleep. You need sleep and sometimes you want to sleep all freaking day. I completely get that. Completely. Beyond any chemical/physical addictions, the psychological/emotional/mental connection here is huge. I don't take Xyrem, or anything to sleep but I empathize with your emotional need. Unfortunately I don't have any suggestions on how to eliminate that. But I would suggest that you try to take some time to really think about it and maybe see if you can, in your mind, work out what are the emotional issues vs the physical issues involved. If you stop taking any pharmaceuticals to get you to sleep, is the cycle of behaviour going to stop? I could be way off base here but it struck me as odd that you said you don't have withdrawal symptoms. Please know that I'm not a doctor or an addiction specialist or anything, simply another concerned pwn. I'm just pondering whether or not his sounds like a physical addiction. Tolerance and addiction are not the same thing. Is it the Xyrem that gives you relief or the sleep that gives you relief? I could very well be a mixture of both, but I thought I'd offer up those ideas on the subject.

#26 Mee

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Posted 13 December 2009 - 09:45 PM

PWN in Deutschland,

Kudos to you for getting the courage and looking for help! I have similar N as yourself. I fell asleep 4 out of 4 naps and went into REM in <1 minute and don't have cataplexy. I have taken different med cocktails but I'm currently on Xyrem, Ritalin, and Wellbutrin (near the lowest dosage for each). I am not addicted to Xyrem and I'm one of those type of persons who just don't really feel good with any kind of "high". So to Henry, I have been on Xyrem for a year then took 2 years off (didn't like how I felt) then went back on it this year. I felt like I was in REM mode all night and never felt rested (increasingly worse over the last few years) so I feel the benefits of using Xyrem even though I don't have cateplexy. AND I have no addiction to Xyrem. PWN in Deutscheland, out of curiousity, what is your nightly routine before taking Xyrem, when do you eat your last meal, and whats your exercise routine? I've noticed Xyrem effects me in varying degrees depending on those 3 factors.

So PWN, there's hope. I think you are on the right track. I'm not an addiction expert but know that you can find support here. Tough love is what we need at times. I think you know that since you specifically noted that you didn't want any kittens or hugs. You are asking for that kick in the *** that we all need sometimes. So feel good that you're not really all that unique because you're not alone! Please keep us updated on how you are doing.

Wish you well,
Mee

#27 PWN in Deutschland

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Posted 01 February 2010 - 06:39 PM

Hello to All! PWN in DE here!

I find myself at a loss for the appropriate word to describe how i feel about all of the advice i have received. some has been very insightful, some meaningful, some rah rah, some crap, etc.

The part i cant' get past is that out of a community of more than 200k people, there is not a sole that shares my experience. when i originally posted, this was what i was looking for more than anything. so here's the update. i got back down to 12 g per night, that lasted less than a week before i worked myself back up to stupid, and between January 12 and 16th, i had consumed more than 2.5 bottles of xyrem. I have no idea how much i took or when. i just remember the haze and the hallucinations in between lost time and lost faces. I was not due for a refill until feb 3. I used this info to rationalize that i should take it all as quickly as possible so there would be no more and then i could detox... this may have been silly.

either way, i have been xyrem free since january 17. For those of you that say 'that is only 15 days, come on,' you have never had an addiction. i am refilling my next script on wed 2/3, but my husband is taking it to a friend's house and i will not have access to it. i simply have to keep refilling for insurance reasons (i.e. they *BEEP* me if they sense an issue). So by the time i start taking it again, i will have been off from 1/17-2/17, a full 30 days. this is definitely enough time for my body to be rid of it, but the psychological aspect is really taking its toll.

i am angry. i am furious at nothing, everything, everyone. i hate the world and i want to lash out at all people, but not cute and fuzzy animals which i hear is good because it means i am not a sociopath (small favors, right). i am taking clonazepam at night, 3 or 4 mg which is way too much, but it gets me through. i am drinking way too much alcohol, but again, it gets me through. i have officially come out to 2 of my friends and told them what is going on and they are supportive, but they really don't know how to be. my husband is (and truly has always been) an ass and is much more concerned about how this is going to affect him.

so the first 5 days were really bad and very drunk. the next few days were clonazepam and a bit of vodka and were better. I have decided that one of the biggest problems i have is that i lack a routine like i used to have, so i am creating a new routine. Of the last 15 days, i have exercised 14 (i used to exercise a lot) and I am making sure i get my 5 fruits and veggies and proteins. i have had too many days where i woke up at 3pm, but i am now setting an alarm and trying for 10a at the latest, but it is hard because i have trouble falling asleep at night. (but let's all be honest among the PWN community... no matter how much or how little we sleep, without xyrem, there is no real sleep). i have had one or 2 fabulous dreams of robert pattinson and not wanted to wake and i have had way too many more dreams of falling or burning where i could smell my singed flesh and woke up and had to open every window even though it is below 0 because i couldn't get the smell from my nose and the tingle off my skin.

i don't remember who it was that talked about the addiction of sleep, regardless of xyrem. the more time that passes, the more i believe this to be my problem. i should post this question somewhere else, but let's see how it works out here...

without medication, my life is pain. i lose hours of my day. i have no idea how i get from one place to another. i have complete conversations with people that i wasn't mentally present for. at night i am tormented by demons. i am tortured, raped, burned, and filleted alive. when i wake in the morning these "dreams" are as real to me as anything else in my life and they plague my thoughts and they consume my mind. In 2005, i tried unsuccessfully to kill myself. long story short, i had had a bad few months. i drank my entire month supply of xyrem, 5 bottles. i sat on my bathroom floor and i cried and my cat came and sat in my lap. i didn't want to be alone. i went to my husband and told him i was tired and was going to sleep on the couch by him because i didn't want to be alone, but my cat wouldn't stop crying, and my husband figured it out. i remember the ambulance coming. i remember being embarrassed that my entire community would see the fire trucks. i know that they must have gotten there very quickly because with as much as i took, it should have taken max 20 min for me to be out.

the paramedics came into my house and argued with me because i didn't want to put on my shoes. i was in my pj's and that was enough for me and at some point i fell down and the next thing i remember i was in the ambulance (with my stupid shoes on). i sat in the ambulance and argued with the EMT because i told him he should let me go. i explained to him that i never feel good, that every breath i take is an effort, and that i have nightmares that make me feel like evil incarnate. i don't remember what he said to me. i was very dehydrated and they have to poke me 9, 10, maybe 15 times to get a vein.

the next thing i remember is waking up in the ICU. i had an IV, a catheter, nose oxygen things, heart monitors... and i HAD NO IDEA WHY I WAS THERE. ahh the beauty of xyrem to take away the pain of our dreams. i didn't know where i was or why i was there. my whole family was there and i was in pain and that was all i knew. it took 2 days to come back. at which point they put me in the loony bin on suicide watch. they had broken 2 of my ribs and a small bone in my sternum b/c they do this pain response thing when you try to kill yourself. every time i stopped breathing they had to revive me with CPR and apparently i had done a pretty good job, as they had to revive me more than 6 times. unfortunately, none of the docs there had any experience with xyrem, so they had no idea what to do with me, and just broke my ribs until i woke up and responded. i am happy that i don't remember that. but i do remember the 3 weeks of pain that followed. i also have a permanent injury in my sternum that hurts pretty much always.

i have been telling all of you bits and pieces of this story since i first posted. i am hoping now that you have a whole picture, well, not yet, i am not done yet. very bad things have happened to me for as long as i can remember. it wasn't my parents fault. in fact, when they found out, police and social workers got involved which made me feel worse, but that is not the fault of my family. i have had narcolepsy for as long as i can remember. my formative years, ages 4+, are confused and mixed with normal, fantasy, horror, and pain. it is rare for people to experience N at such a young age, but i remember the dreams, hypnagogic hallucinations, and sleep paralysis. i can remember episodes of cataplexy when i was learning how to ice skate and i was nervous and i would lose my left side and everyone would laugh but it took me an hour or more to recover.

so i am different, unique, special. someone should put me in a lab and i can run on a wheel while they study me. you don't have to be a genius to discern sarcasm here, even from flat words on a screen.

so here's the question, the one i referenced above... i want to die. i am not depressed. there are many things in life i enjoy. there are people that make me happy. i would never try to kill myself again because i know what it would do to my family, and I will NEVER do that... but what if it was an accident? this is not a question just for me because i have a sad story to tell. this is a question that anyone that lives my life should ask. i am taking no medicine, other than anti-depressants ironically enough. i am addicted to sleep without dream, which comes to me via xyrem. so would i not be a person better off to be dead? i guess a lot of this depends on what you think happens to you when you die. i think it is like going to sleep without dreaming. i don't believe in God. aside from N i have a joint disorder. aside from N i suffer from obesity and depression. when is enough enough? i know that my desire to be dead is purely selfish, but i don't care. i will not take myself from the people that love me, but if something else could, i would be forever grateful... am i alone in this too?

#28 narcshark

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Posted 01 February 2010 - 11:41 PM

Dear PWN,
I know you say you are not depressed, and I certainly can't tell you how you feel. However, I can say with confidence that you are suicidal (perhaps passively suicidal, but suicidal none the less). You also sound as though you have suffered from childhood abuse (PTSD?) and relationship problems. It also sounds like you have a very serious addiction problem with alcohol, benzodiazepines, and GHB/Xyrem. This combination is likely to be lethal. You are at extremely elevated risk of suicide. This greatly concerns me, because I believe that there is a part of you (the part that wrote your post today for everyone to see) that wants to reach out for help and live. There may be a part of you that wants to die, but there is also a part that wants to live. Please listen to this latter part. None of this is your fault, but it is up to you to reach out to someone (locally) who can actually help save you. I have read on your prior posts that there are many barriers for you, so I have taken the liberty of researching local, English speaking providers in your area that accept TRICARE and do not require any prior-authorization. Now, I know that you have said that your husband is with a private company and not the military, but please note that TRICARE pays providers miserably so the listed providers are probably very affordable for someone who is paying out of pocket. And they are probably very used to working with Americans who have relocated to Germany. Please call one of them today. Please stop worrying about how this will impact your husband's career and start worrying about you (as everyone reading this is)...This could be your last chance....

Patient Information

PSYCHIATRISTS

Dr.med.Matthias Abel (Adult Psychiatry) (Male Provider)

Calwer Str. 25, 70173 Stuttgart Tel.:0711-221713

Dr.med.Andrea Kruppa (Adult/Adolescent Psychiatry/Psychotherapy) (Female Provider.)

Calwer Str.25 ,70173 Stuttgart Tel.:0711-221713

Dr.Christina Brandt (Psychiatrist/Neurologist) (Female Provider)

Wilhelmstr. 16/1, 74072 Heilbronn Tel.:07131-628600

PSYCHOLOGISTS

Dr.Erica Applezweig (U.S. Licensed Clinical Psychologist) (Female Provider)

Langestr 51, 70174 Stuttgart Tel.:0711-244297

Dr.Shelley Kraft-Hanak (U.S.Licensed Clinical Psychologist) (Female Provider)

Egertstrasse 16-1, 72636 Frickenhausen-Tischardt Tel.:07123-367338

Dipl.Psych.Clive Reuben (Counseling Psychologist) (Male Provider)

Friedrich List Str. 36 Tel.:07031-223132

Dr.Philippos Vanger (Adolescent and Adult Psychologist) (Male Provider)

Calwerstr. 25, 70173 Stuttgart (philippos.vanger@t-online.de) Tel.:0711-2269623



#29 Bafflegab

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Posted 02 February 2010 - 10:25 AM

Suicide ideation and being suicidal are not synonymous. They may have the same parents, but they are very different mindsets.

I also think it's quite possible that all of Deutschland's (and her husband's) emotions are perfectly rational expressions to the stress she's under.

I have a really terrific life: a wonderful wife, a job I love (if not the people I work with), kids who share my love of them, I'm not in any debt to speak, and except for the narcolepsy I'm healthy. But the effects of narcolepsy trumps everything and makes every day a monumental struggle. Everything is hard! I struggle with a poor working memory, people other than my wife and son are difficult and exhausting (I love my daughter and think she's a good kid who will be a good adult, but the truth is, she is difficult), I struggle to stay awake and fight going to sleep. Every single thought I have, I have because I've fought for it. Right or wrong, every thought is trapped in a bank of fog so thick my cognitive skills are less a function of who I am than they are a hope. Everything in my life that I value depends on my ability to access the skills and functions of my own brain. And I often can't.

I can't imagine how much more difficult life would be if addiction were added to the mix. Difficult enough, I imagine, that most PWNs wouldn't be able to survive the two simultaneously. If there is a reason most narcoleptics don't have addiction problems, that's probably it. Luckily, most of us don't (which is why, PWN D, you are having a hard time finding another addict with narcolepsy to commiserate with).

That Deutschland has, and is actively dealing with them both says a lot of really good things about her. Forget the question of whether she is dealing with them successfully or not--just the fact that she's fighting them both is enough. She needs help. It's that simple. It doesn't sound like she has much. I hope she finds it.

#30 Saraiah

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Posted 02 February 2010 - 11:13 AM

Dear PWN in Deutschland,

When hallucinations became more real for me than reality, and when the hallucinations were full of hate and caused me great fear, that was when I knew it was time for me to go to a psychiatric hospital. And I went to the psych hospital, and worked very hard, and got better. I'm not where you are right now, but I've been there. There is a way out. YOU ARE THE ONLY PERSON WHO CAN WALK IT. You are the one and only person who can ask for help, who can find a good therapist and psychiatrist, who can make use of the help those clinicians can offer to you.

You are not a child any longer, thank God, not a child who is powerless over the circumstances of her life and of her own disease. As an adult, you can make choices to keep your body and mind safe, to ask for help in understanding your narcolepsy and PTSD and other things that affect your present experience, and to learn powerful new ways of coping. You are the ONLY person who can bring yourself healing. But if you decide to walk that path of healing, there are people who will walk it with you.

I've been where you are now. I used alcohol in an utterly misguided attempt to help myself feel better. And I've at times heard non-narcoleptic hallucinations coaching me to kill myself. Where you are is extraordinarily difficult. But there is a way out, and you can find it. Pick up the phone and start calling some of those therapists and psychiatrists that narcshark kindly found for you. Let us know how it goes.

Saraiah

#31 PWN in Deutschland

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Posted 05 February 2010 - 11:07 PM

ok, so i finally came to terms with the fact that i obviously can't do this alone. you will all be very happy to hear that i took a flight home and have an intake appointment with a rehab clinic tomorrow. i am very nervous. i talked with my doctor and he has no idea what they will do with me because there aren't all that many treatment options for N and all of them are generally disallowed by rehab programs... i am somewhat expecting them to 'admit' me for inpatient detox, as is my doc. so that is usually like 8-10 days and then i go to a partial hospital program everyday from 9-3 for the rest of my life or until i get better...

#32 PWN in Deutschland

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Posted 07 February 2010 - 02:25 PM

ok, they didn't admit me for inpatient, partial hospital or anything. they told me to take the recommended dose until i can get in to see a shrink that they recommended which will probably be at the earliest by wednesday. wtf? i thought i would like get some help or something. i was totally and brutally honest. i sent an email to my neuro to see what he thinks. does anyone have any suggestions for help in the chicagoland area?

#33 Saraiah

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Posted 07 February 2010 - 04:54 PM

ok, they didn't admit me for inpatient, partial hospital or anything. they told me to take the recommended dose until i can get in to see a shrink that they recommended which will probably be at the earliest by wednesday. wtf? i thought i would like get some help or something. i was totally and brutally honest. i sent an email to my neuro to see what he thinks. does anyone have any suggestions for help in the chicagoland area?


CONGRATULATIONS on going to get help! Good for you - I am SO proud of you. Now you are on the road to getting better.

I am really puzzled that you weren't admitted you to an inpatient or partial hospitalization program. Are you in a much different place now than the last time that you wrote to us? My first piece of advice is that if you are now feeling that you need to end your life, either "on purpose" or "by accident," you need to go IMMEDIATELY to the nearest emergency room and tell them EVERYTHING that you are thinking about doing, and ask for help. And of course, keep your appointment with the psychiatrist you've been referred to on Wednesday. In the meantime, find some Narcotics Anonymous meetings and GET YOURSELF THERE. The people in those meetings will understand exactly how much danger you are in, and they may have good advice about finding good treatment.

Do you feel that you are capable at this point of taking only the recommended dosage of Xyrem until Wednesday? What about alcohol and any other drugs that may be calling your name? If you have any sense that you may attempt to OD again, GET RID OF THE XYREM NOW, either by asking a friend or family member to hold it for you, or just pouring it down the sink. Or just go to a hospital and say clearly that you are planning to overdose. You are so close to getting help - take care of yourself now, while you are in a strong place.

What sort of place did you go for evaluation? Was this a place that specializes in drug abuse, detox, and treatment? Make sure that you're going to a place that has the expertise to care for you. Have you thought about going back to whatever hospital that cared for you after your OD in 2005? That might be a way to get help from people who understand your history and thus have the information to take your predicament seriously. I'd strongly advise you, wherever you go for help, to print out your posts to Narcolepsy Network to show the doctors, along with any other writing you've done that expresses how much danger you have been putting your body in, and how much difficulty you are having abstaining from doing so again.

If being quiet and calm doesn't help, then BE LOUD. BE SURE that you are communicating the danger you are in to the people who can help.

GOOD FOR YOU for coming this far. I'm sorry that it's not immediately easier. KEEP GOING. You can do this.

Saraiah

#34 jado

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Posted 08 February 2010 - 10:23 AM

Hi Sleepless Sleeper!

Sorry being a way for so long. Hugs {{ }} XxX

Greetings PWN in Deutschland!

Kindly forgive me however preposterous my views may seem, however even wrong they may actually be - I post my concerns anyway without a care in the world how silly I may feel later

But to raise doubt is good, specially if something is bugging me to speak up

And I always love to be proved wrong.

My knowledge of medicine is limited to personal experiences mostly. I have no M.A.D // Still I hold firmly with my previous theory.

And if I should step-through the rationale behind it (unwillingly, since I am cautiously aware of human thought biases and fallacies) ok then here they are:

* Anti-depressants are prescribed to tackle Cataplexy (source: wikipedia)
* Xyrem "seems" to be effective in reducing Cataplexy over other anti-depressants (source: who knows, also this)
* Xyrem started of a cataplexy reducing agent (source: wikipedia references)
* Xyrem then was argued to also induced deep sleep (source)
* Xyrem is a potent Hypnotic (search for keyword: 'hypnotic' here)

* Hypnotics induce deep sleep (ok trivial)
* Hypnotics are not effective in the long term (wiki)
* Hypnotics can be highly addictive / tolerance building (more personal experience, other people's account + wiki)
* By increasing the user base of Xyrem, Jazz Pharma gets more $ (ok obvious)

* Doctors are then encouraged to make Xyrem the panacea for all Narcoleptics (including those without Cataplexy)
* But doctors like my own from Brazil, appeared to have reservations against the idea (on asking if i could "try" - he replied: "But you don't have Cataplexy")

* I never read a post about a Cataplexic patient complaining about spiralling out of control over Xyrem (but then I could have missed!)

* But I have read or spoken to people spiralling out of control over hypnotics (such as Ambien, and such as myself)
* Yours is the first account I read against Xyrem.

Which led me to conclude that:

* Xyrem works best and safer as a long term anti-cataplexy agent for those suffering from the condition.
* But less so and less safe as a short-term hypnotic for those that don't have Cataplexy.

* Xyrem should NOT be used as a sleeping pill ever.
* It is an anti-depressant for Cataplexy ; whatever the Marketting Deparment of Jazz Pharma agenda's lie

* As more and more doctors push Xyrem for non-Cataplexy patients we could start seeing others spiralling out of control also, and that would be unfair and sad !

* It took me 4 years to spiral out of control over Ambien/Zolpidem

* So it may take a while for us to hear similar stories such as yours. The time-bomb is ticking.

Please understand my motive is *not* to prove I am right or someone else wrong.

As a matter of fact, I pray to God - I am ever so wrong.

I don't fear ridicule if I am proved wrong. I love it.

But I feel somewhat of a duty to raise my alarm and suspicions specially if other people's safety is a stake.

While some may have great faith in modern science, doctors and pharmaceuticals as gospel, I clearly do not.

I've accidentally overdosed on Ambien / Zolpidem. On two separate occasions. I slept walked munched all the pills in an euphoric trance - ended up on an ambulance.

It took me 4 years to finally reach that tipping point.

But imagine if that had happened with XYREM? - I clearly wouldn't be here alive today .. typing this - Death threshold is ever so low with XYREM ... 2 or 3 drops extra is all it takes.



#35 jado

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Posted 08 February 2010 - 10:32 AM

Got a few email alerts from this site, not sure why I got them but glad people have read my posts reading Xyrem side effects. I got a couple of posts from Saraiah and PWN in Deutschland but they were older and I saw some GREAT information from Narcshark listing some resources, good work! I'm just looking for people who have had difficulty with Xyrem. Again I strongly recommend the book "G'd up, 24/7". You can get it from www.projectghb.org Jado

#36 vidar

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Posted 08 February 2010 - 08:11 PM

Rogers Memorial is in Kenosha WI and Milwaukee WI. "For information about hospital services or to speak with an admissions specialist, call 800-767-4411 (toll-free, nationwide) or 414-327-3000 (Milwaukee)."

It's a psychiatric hospital if that is what you are looking for.

If you wish a second opinion at an emergency department or feel your life is endanger you should go to the nearest Emergency room. Froedtert Memorial Lutheran hospital is an academic medical center (and thus would have numerous physicans able to evaluate you and present at all hours) in Milwaukee located just off the freeway.

Best

#37 Marcianna

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Posted 09 February 2010 - 07:42 PM

Wow. I am reading this very late obviously. But this thread is exactly the kind of thread that defines us as a community who helps each other out. I m sending virtual hugs to all of you! I really wish I had more time to be on here! I miss the interaction.
PWN I hope we hear how you are doing again soon. It has been nearly a month since anyone posted here. I am a little concerned, I imagine we all are.

Henry, I am so glad you brought up your theory, because I was seriously confused. I take Xyrem and have absolutely no problems at all. But I do have Cataplexy and it is very severe. I had no idea you could get addicted to Xyrem. I know I tend to get addicted to being awake and stay up later and later ...lol. but I have got that kicked now. I have never heard of anyone getting "high" off this drug before. I'm taking 4.5g twice a night and all it does is knock me out in about 20 minutes. And since it only keeps me down for about 2.5 hours, I may be going up in the dosage. Or that was the plan....

My Doctor just died so I will have to find a new one. I'm not looking forward to it because they tend to not want to work with my other health issues and just bark orders at me. I am very nervous. I have to say I have very little trust when it comes to doctors. I realize I am on a relatively high dose of Xyrem now, but for my own safetly, and peace of mind does anyone happen to know what the highest recommended dose is? How much is too much? I feel bad saying this, But more often than not in my experience, I have gotten more accurate info here than I have gotten from my doctors. (Previous one who died excluded. He was amazing.) I just wantto be well informed when I start the doctor search all over. Again. =(

#38 vidar

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Posted 09 February 2010 - 09:10 PM

"Xyrem is required to be taken at bedtime while in bed and again 2.5 to 4 hours later. The dose of Xyrem should be titrated to effect. The recommended starting dose is 4.5 g/night divided into two equal doses of 2.25 g. The starting dosage can then be increased to a maximum of 9 g/night in increments of 1.5 g/night (0.75 g per dose). One to two weeks are recommended between dosage increases to evaluate clinical response and minimize adverse effects. The effective dose range of Xyrem is 6 to 9 g/night. The efficacy and safety of Xyrem at doses higher than 9 g/night have not been investigated, and doses greater than 9 g/night ordinarily should not be administered"

This is the PI from rxlist.com

So what's the max dosage in reality? The one right bellow the one you won't wake up from...

Serious though, that's the problem in figuring out the max dose in that too much and you don't wake up. Thats bad for malpractice premiums if you are a doctor. The best person to give insight into that probably could be an Emergency Department doctor in a heavy college area with a strong party environment as they see it with raves. However, with tolerance I wouldn't be surprised if you couldn't go pretty high. I've heard of ODs from raves between 40-80g.

#39 PWN in Deutschland

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Posted 10 February 2010 - 12:56 AM

just to clarify, i don't get high off xyrem. i seek sleep and take too much to get more sleep and i greatly enjoy being asleep as was noted early on. i currently have no treatment plan and the doc i saw today reduced me to 9g total dose and said come back in 2 weeks. like that's helpful in any way.

i OBVIOUSLY recognize the potential for xyrem abuse, but i don't buy into this crap about it being GHB so it is bad for everyone. it was the only thing that really helped me for years. i am the one who let myself overindulge and sleep all damn day and yes that is a problem, but not because of what the medicine is. stupid kids take GHB as a club drug and use it as a date rape drug and this is VERY BAD. but what it comes down to is these stupid kids are abusing GHB to get high, not to go to sleep! their bodies work just fine and so they don't need a CNS depressant to have normal sleep which is why it is bad for them. PWN need a CNS depressant in order to achieve effective sleep, so it is not bad for PWN.

for the moment, i am awake and bored and haven't taken my dose b/c i don't want to be up early in the morning, so i thought i would lend my opinion of this crap about xyrem being bad, b/c i don't think it is. and anyone that thinks it is a dangerous substance that has no benefits to the appropriate patient, doesn't know a damn thing about N.

#40 PWN in Deutschland

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Posted 10 February 2010 - 01:02 AM

xyrem is not a hypnotic. it is a central nervous system depressant and that is why it can (potentially) lead to deep sleep.

ambien is a hypnotic. i have no idea how that gets people to sleep. i used to take it before i was diagnosed and i think it just made HH worse and sleep less effective, but i could see how someone could get addicted to the ambien quickly and easily. you get tolerant within 10 days. i don't think it is intended as a long term sleep solution, but is anything, really?