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Xyrem Addiction


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#1 PWN in Deutschland

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Posted 12 October 2009 - 01:01 AM

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.

#2 Kathleen

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Posted 12 October 2009 - 10:16 AM

Oh my, .... I wish that I knew more to answer your question about how long it has to be out of your system, but I don't, I am sorry. Hopefully we can find that answer here.

The fact is, you know this is a problem, you have an addiction to a drug. Admitting it is the first step - congratulations. ;)
Being willing to change is another step altogether. The addition has a hold on you that you cannot control, that is why you keep wanting more. It is a cycle that only you can decide to break. I am very glad that you posted here, sounds to me like you have the willingness to change, you just need a plan. I will not tell you that it will be easy, it will be hard, but you know it has to be done.

Of course, my strong suggestion is to talk to your doctor, you may not be the only one that has this problem. I am not a doctor, I do not play one on TV, and cannot give any medical advice. With that said....If you choose not to talk to your doctor, keep reading...

You mentioned that you were a housewife, so first of all, I would come clean with your husband. If not, do you have someone close to you that you trust? (Maybe your chem friend! ) If so, I would sit down, and spill your guts - being accountable to another person will help you stay strong and do what you know in your heart you HAVE to do. The addiction will cloud your thought process, as you have realized. Maybe you could make a plan to taper the Xyrem back to the original dose.

You may even consider visiting a 12 step meeting, even if it is just to listen & get some literature.

After reading your post, I had to reply, I am afraid for your safety, please do something right away and keep us updated.

Kathleen, PWN in US:wub:

#3 Bafflegab

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Posted 14 October 2009 - 03:01 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.


Who can blame you? The Xyrem high is bliss and falling asleep is absolute hell. The in-between state of being awake and being asleep scares the sh*t out of me. So much so, that I've spent practically my entire life postponing falling asleep as long as possible. Sleep without Xyrem means having to suffer through hypnagogic hallucinations and dreams that are violent and disturbingly bizarre. Narcolepsy alone is incredibly difficult. Adding addiction to the narcoleptic burden has got to be unbearable.

But, it doesn't have to be. Withdrawal from a Xyrem addiction is similar to withdrawal from alcohol. Kicking the addiction is going to be rough. It means nine days of tremors, anxiety, restlessness, visual and auditory hallucinations, delirium, insomnia, delusions, paranoia, excessive sweating, hypertension, nausea and vomiting, psychosis, and of the 87 reported cases that are in the literature, there have been two people who suffered seizures and one person who died trying to kick the addiction. The majority of those 87 cases were taking about 27 grams a day and had been for an average of just over a year. The withdrawal symptoms start roughly 46 hours after their last dose. The good news is that the withdrawal symptoms only occur after an abrupt cessation of the drug. If you taper off, it's possible to quit the physical addiction without having to suffer too much. Getting rid of the emotional addiction won't be so easy. For that, you'll need professional help from someone who is experienced in managing withdrawal from an addiction. It's a medical procedure that requires monitoring and anticipatory supportive care.

Whether you want to or not, you need to tell your doctor. You said the Xyrem isn't working, so why not get clean? Start a regimen that works. What have you got to lose?

#4 PWN in Deutschland

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Posted 15 October 2009 - 11:51 PM

I can't believe this. I appreciate the 2 posts that have replied to my sucky life, but I was really, REALLY, hoping to find someone, anyone, who had experienced a similar problem. instead i find out that there are only 87 reported cases of xyrem additction ever?!? So now, not only do i have a rare miserable and socially comical sleep disorder, but i am among the 0.00001% of people that have ever gotten addicted to the treatment.

I appreciate all 2 replies with words of encouragement, but as far as i can tell, my life will be easier if i simply make peace with my addiction and sleep my life away. what else is there really be awake for anyway?

#5 Bafflegab

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Posted 16 October 2009 - 09:25 AM

I can't believe this. I appreciate the 2 posts that have replied to my sucky life, but I was really, REALLY, hoping to find someone, anyone, who had experienced a similar problem. instead i find out that there are only 87 reported cases of xyrem additction ever?!? So now, not only do i have a rare miserable and socially comical sleep disorder, but i am among the 0.00001% of people that have ever gotten addicted to the treatment.

I appreciate all 2 replies with words of encouragement, but as far as i can tell, my life will be easier if i simply make peace with my addiction and sleep my life away. what else is there really be awake for anyway?


Now you're just whining and sounding like you feel sorry for yourself. Never a good thing.

I didn't say that there have only been 87 cases of Xyrem addiction ever. I said that there have only been 87 documented cases that have made it into the published medical literature. And if you are addicted to Xyrem, I'm not sure that is the same thing as being addicted to the treatment. It's more likely an addiction of drug abuse. I doubt anyone thinks it's a socially comical sleep disorder. On the contrary, I think most of the people who read and participate in this forum would be empathetic about your situation and would have voiced their concerns with posts of support and sympathy but you told them "not [to] reply with any fluffy kitten and hugs advice."

If you want to quit the addiction, you can. Being pissed at other PWNs because they don't share your concerns isn't going help anyone. If you want to sleep your life away go ahead. I doubt anyone will try to stop you. If you're lucky someone will, but it's not going to do you any good to be angry at the people who frequent this forum. If all you want is sympathy go to www.poetry.com and write a bad poem. If you want to quit your addiction you need to face the fact that it's your addiction. You're going to be the one that has to deal with it, and that it will probably be painful. At best, uncomfortable. If you get your doctor involved or check into a clinic you'll be able to get help and access to medication that can make the process easier, but feeling sorry for yourself because you're not getting the sympathy you want or think you deserve isn't going to be any help at all.

The good news is that treatment for addiction is readily available in Germany and it's taken seriously. It doesn't have the same social stigma in Germany that it does in the United States and the treatment is comprehensive and affordable.

In Germany drug addiction (both illicit and prescription) is the responsibility of the Federal States and municipalities. Treatment is offered by the primary health care system and takes place in hospitals and treatment centers specializing in illicit and prescription drug treatment. Psychosocial care, psychotherapy and medical care is provided by medical staff qualified in addiction medicine. Funding is provided by the Federal Lander, the German Pension and Health Insurance Bodies, municipalities, communities, charities, private institutions and companies. In 2006, there were 934 outpatient treatment centers offering contact, motivation and outpatient care for patients in substitution treatment. There are 2,706 physicians in Germany who are licensed to provide drug addiction treatment and care in over 160 specialized inpatient rehabilitation treatment centers that provide long-term withdrawal and abstinence as a pre-condition for restoring the working capacity of the client.

Help is available. If you want it.

#6 PWN in Deutschland

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Posted 19 October 2009 - 02:29 PM

i was not suggesting that the people on this board think that N is funny, i am saying that socially, it is misunderstood and most people know all they know from watching deuce bigalow. the people that are on this network, i assume, feel just a annoyed and/or pissed about the way the rest of the world thinks N works as i do. i am not looking for sympathy from the network, i was really hoping to find anyone else that had a similar problem and was more than a little disappointed to find that i am alone. wanting sympathy and wanting to not feel alone are entirely different concepts. unfortunately, regardless of the number of people that are here and dealing with the hell that N makes every second of every day, it still seems that my 'addiction' is a rather unique problem... and i just didn't want it to be.

#7 Bafflegab

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Posted 19 October 2009 - 03:00 PM

i was not suggesting that the people on this board think that N is funny, i am saying that socially, it is misunderstood and most people know all they know from watching deuce bigalow. the people that are on this network, i assume, feel just a annoyed and/or pissed about the way the rest of the world thinks N works as i do. i am not looking for sympathy from the network, i was really hoping to find anyone else that had a similar problem and was more than a little disappointed to find that i am alone. wanting sympathy and wanting to not feel alone are entirely different concepts. unfortunately, regardless of the number of people that are here and dealing with the hell that N makes every second of every day, it still seems that my 'addiction' is a rather unique problem... and i just didn't want it to be.


I agree with everything you've said here. Narcolepsy isn't understood by many neurotypicals, and it is a motherf*cker of a disease/disorder. Dealing with just narcolepsy is incredibly challenging and frustrating, I can't imagine having addiction thrust into the mix. I feel for you. I really do. The only advantage you have over other people who are in your situation--and there may be others, despite the lack of documented cases--is that you are in Germany. If you have access to their health care system take advantage of it. They do addiction rehabilitation really well. I think it's important too, to remind you that addiction to Xyrem is easy to break. It may have a horrible detox period, but once your through that, the hard work is pretty much over. You'll still need some support, but it's not like alcoholism. The chances are you won't be fighting the urge the rest of your life. You'll have your life back and you'll be able to get on living it.

I wish you luck.

#8 Kathleen

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Posted 19 October 2009 - 04:22 PM

Thanks for the input Bafflegab.

to PWN in Deutschland, is is possible that others that may have more information, but they just haven't logged on in the last 5 days to read your post. Some members here only stop by once a week , many more even less. I don't mean that in a negative way, just an observation. :)

I am glad that you are looking for help. Please be patient the replies my not come as fast as you expected them. I do hope that you are seeking help, as sleeping your life away on Xyrem is worse than sleeping your life away with N. Not to mention a lot more work, and cost!

#9 Saraiah

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Posted 19 October 2009 - 10:08 PM

To my Deutschland friend,

I struggled with alcoholism in my late 20's and kicked it. Later, I worked for 18 months as an addictions therapist with women who were in far over their heads with alcohol and other drugs. So first, I understand how powerful addiction can be, and how strong its hold on a person can become. I hear that in your posts - taking the first step to acknowledge your addiction, while simultaneously hearing its siren song for you.

The most important thing I hear you saying is that you're not at all sure there is anything to be gained by trading the (extra?) Xyrem for getting up in the mornings. A person that does not want to be awake is almost always suffering from depression. Although I don't know what the research is on this, it was my experience that the women I treated who were diagnosed with both depression and addictions were those who had absolutely the worst time kicking the addictions. They were the least able to see what the benefits might be, and also the least able to resist relapse when life became overwhelming.

Addressing your own sadness, boredom, anger with being saddled with narcolepsy, anger with being saddled with addiction, etc. might be the most effective place to start. When you can't see a lot of clear reasons for kicking an addiction, it sometimes becomes impossible to go through with it. Although I admit I'm biased towards psychotherapy, it can be a lifesaver in particular when you're needing a person to stick by you while you deal with a whole lot of very difficult stuff.

So how about getting started by giving yourself a break? Make an appointment with a therapist skilled in treating drug addiction late in the afternoon. Make sure that you interview the therapist carefully to evaluate his/her willingness to educate him/herself about the basics of narcolepsy. (If the first therapist doesn't fit the bill, make an appointment with another one.) And get some support! You might get help in developing the hope and clarity that you need in order to make kicking your addiction to Xyrem possible.

Take good care of yourself,

Saraiah

#10 narcshark

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Posted 21 October 2009 - 12:57 AM

Hi,
I have read all of these posts about your Xyrem addiction...I am sorry to say that I have never used Xyrem so I really don't know what you are going through. However, I do have N, so I get that part. I work in a psychiatric hospital, and I can tell you that we do detox for many different drugs. Sometimes, when a person is having a very rough detox (is there ever an easy one?) it is possible to accomplish the physical detox with the person somewhat or perhaps completely anesthesized (i.e. unconscious). So, I would suggest that you perhaps at least call some detox facilities and ask if this might be an option. It sounds as though you are fearful about the detox part, and maybe you could find a center that could keep you unconscious for that part...maybe that would make it less horrible for you...then the only part you would have to deal with is the psychological addiction, which I agree that psychotherapy could be very helpful to treat. The other thought that I have is that it seems that you are so terrified of giving up the Xyrem that you are clinging to it even though it isn't working...it's like you are a woman in childbirth/labor, screaming "I don't want to do this"....screaming in fear won't make this situation go away...the only way out is through the pain and facing the challenge of finding another way...so maybe if you found a detox place that could make the worst part (the physical detox) manageable (i.e. through anesthesia) then you could find the strength to handle the psychological part. I wish you the best with that and I hope it works out...please know that the people who work at psych hospitals are here to help you without judgment....

#11 PWN in Deutschland

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Posted 22 October 2009 - 06:23 PM

xyrem detox, day 1

i have had several occasions where i went without X for a few days for one reason or another. i have to say that i have never experienced any "detox" effects. after doing some reading (believe it or not this info is in the little pamphlet of technical info from jazz) it seems that the amount i am taking is significantly less than the standard addict. so maybe that's why i don't get detox issues. my biggest concern with stopping the X is that it is the only thing that makes me sleep at this point... and i have narcolepsy! that's the part that makes me think i have a problem. before X, i would lose 45 min chunks of my days as much as 4 or 5 times a day and at night i had the same creepy visitor with silver sparkling eyes wearing a cowboy hat that would stand over me and stare at me for hours (hypnagogic hallucination) while i couldn't move (sleep paralysis). now, if i don't take it, i can't sleep. so can 20g of X per night cure N? i still have EDS, but just started nuvigil and that seems to be helping... am i rationalizing? when i have had to go 4 - 5 days without X, i had trouble interacting with people, couldn't drive, and my husband would tell me about conversations that we had that i didn't remember being a part of.

to all of you who suggest the logical and (if i must be honest) most appropriate option of discussing with a doc/therapist/shrink etc. i kinda have a problem in that regard. i do not qualify for the german health care system and i am not army. i am here with my husband on a 3-year corp relo to learn the german way. i speak german, but not well enough to communicate well with psychological types. does anyone know how to say hypnagogic hallucination in german? if my husband's company found out about the problem, we'd lose the contract and get sent back to the US which is medically probably the best thing for me. however, my husband would not have a job available in the states due to an early return and we'd owe his company a ton of money for the same reason, at which point i'd also lose my health care coverage. no this is not an exaggeration, employment laws are very different here and this is the god's honest truth. we will be here until 1/1/2011.

i told my husband and he blew me off, which didn't exactly leave me feeling like i wanted to actually talk to him about it. i suppose if i sat him down and explained he'd probably care a bit more, but at this point i am so pissed at him i don't want to talk to him. my best friend here is a therapist/addiction counselor (love irony) and i have decided to tell her... kind of. i have spent the last 3 days not calling her so i don't have to tell her. tonight i left her a message that said i had to tell her something, so now she will pry it out of me. i am considering this a positive step. i decided i would try to taper off and would start with 9 grams total for this and the next 2 nights, then 6 for 3 days, etc.

thank you for your words of encouragement and for not telling me crap like there's so much beauty in the world and i'm missing out on it. my depression meds are well in check. i don't think i am depressed. i do however believe i have reached a point of cynicism about life that gives a negative feelings about life... but that is a completely different topic that i can start elsewhere while i suffer through not being about to sleep and seeing sparks of light and shapes.

#12 Saraiah

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Posted 22 October 2009 - 09:45 PM

This is an honest question, and I don't know the true answer: Would you be capable of taking two doses of Xyrem at night that would be sufficient to allow you to sleep while you should be sleeping, and then abstaining from any further doses that you would usually use to sleep during the day?

It does not surprise me that you have great difficulty when you abstain from Xyrem altogether. Xyrem is the one and only med out there that allows PWN to get restorative sleep. It makes sense to me (though I'm certainly no doctor) that at some point, stimulants like Provigil or Nuvigil simply aren't going to be enough to keep a completely exhausted brain and body awake anymore. You've got to sleep. It was my experience that the Provigil I was initially prescribed had, first, to be increased in dose, and second, eventually became completely inadequate to keep me awake during the day.

If you believe that you'll be unable to abstain from taking further Xyrem after you should theoretically be awake and up in the morning with the Xyrem bottles sitting around, calling your name (which I am quite sure they must be doing), would it be possible for you to ask your good friend or your husband to dole out your two nightly doses from the bottles which they kept elsewhere? For example, could your husband keep the bottles of Xyrem in his office, and just bring home the 2 nightly doses at the end of the workday?

I'm under the impression, as a new Xyrem user in the U.S., that the maximum total dose prescribed here is 9g per night. What would happen if you tried to take 4.5g when you went to bed, and took another 4.5g sometime between 2 - 4 hours later (setting an alarm at the four hour mark to be sure you don't completely miss the second dose - not that I expect that could happen)?

Finally, regarding your perception that you can't access therapy, I think maybe it's time to take a look at what AA calls "stinkin' thinking." My friend, you are NOT in good shape. You know that you need to stop abusing Xyrem, but you're having real difficulty in telling the one friend who will recognize exactly what a bad place you've gotten into. Should you be able to kick the addiction on your own or with the help of your friend, that's fine... But it's not looking real promising here.

If you can't kick this with the help of your friend, you face the choices of either
  • getting more help to beat the addiction, or
  • remaining addicted, a person so cynical and unhappy with the world and herself that she chooses to sleep rather than be in it, risking even greater addiction as time goes on.

FROM ONE ADDICT TO ANOTHER: THIS is where we lose the "so much beauty in the world and i'm missing out on it" crap. Because the reality is that right now, you are so missing out on your LIFE in such a way that for the majority of the day, you might as well be in a coma. Your life may not be a bed of roses, but neither is mine, and neither are the lives of many PWN. And neither are the lives of many people coping with a million other problems, some MUCH more difficult than those associated with severe narcolepsy.

You know, it's your choice. You can choose to lie comatose for 3 more years, risking greater addiction, and ultimately risking death. Some people manage to live high for decades - and their lives are a misery, inflicting misery on those around them. Just ask the spouse, child, or former friend of any addict. Addictions are never happy, and they end in utter disaster. If you can't kick this on your own, you are going to have to evaluate whether you truly want to spend a minimum of 3 more years living like this, taking the risk that by the time you move back to the states, you will be so wretchedly addicted that you will no longer have sufficient drive even to seek help. That is, if you haven't accidentally killed yourself by driving or taking drugs that interact badly with Xyrem while you are high.

Again, FROM ONE ADDICT TO ANOTHER: You are the ONLY person with the power to make this choice, and the ONLY person with the power to give up the addiction. Should you find that you do indeed need help to beat this, you have options. You can find an English-speaking addiction-experienced therapist in Germany, and pay whatever you must out of pocket in order to beat this. Don't tell me it's too expensive: THAT'S BULL. You are half of a high earning couple, and if you don't have the scratch, you can take a menial job that's doable with minimal German, or borrow the needed money. And if it is truly impossible to find an English-speaking therapist near you in Germany, you have more options still. You can take an extended "visit" to the States to enroll in drug treatment. You can travel to England or elsewhere for a "visit" to get treatment there.

Now, I can guess that it's going to wreck your husband's position should you even travel away from your home in Germany. If that's the next argument headed my way, you are simply going to have to contemplate: What is more important? This particular job, or my life? Should you two return to the States jobless, you'll join me and a bunch of other people doing whatever we must to eat and keep a roof over our heads. WHAT IS MORE IMPORTANT, YOUR HUSBAND'S CURRENT JOB, OR YOUR LIFE?

That, my friend, is the crap-free version of reality for you. From one addict to another, what will your choice be? I first beat my addiction 11 years ago, and I keep beating it every single day. This could be you: Eventually discovering that there are truly some excellent reasons to choose to leave the coma to stay awake and alive. That's me - that's what I've found.

It's looking like at 41, I may now be completely unable to work again (or at least, that's what my doc told me last Friday), I've got one kid in college and another headed that way, and my husband episodically announces he's leaving me when he gets particularly overwhelmed by the whole situation. Even on Xyrem and Provigil, I cannot stay awake longer than 4 hours at a time without being overwhelmed by involuntary sleep attacks, HH hallucinations, loss of short-term memory, inability to think logically, and sometimes becoming incoherent when I speak. So I'm not speaking from a bed of roses at the moment. But my life is very rich in ways I could not imagine when I was drowning my sorrows in alcohol, and I am happy. I realized that the other day. I am happy. I know that you probably cannot fathom how that could possibly be true at this point in your addiction. But it is true. If you'd like to know more about it, email me: I'll be glad to share the evidence.

So, FROM ONE ADDICT TO ANOTHER: What's your choice going to be? IF you decide that you would like to emerge from your coma permanently, the help you need will be there. You may have to work very hard to access it, but it is there. You will NOT have to do this very hard thing alone. Let me know if you'd like some of that help.

Saraiah

#13 Kathleen

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Posted 22 October 2009 - 10:01 PM

I am so glad to hear that you have decided to talk to your friend, and that she is an addictions counselor is great. I am sorry to hear your husband's reaction, maybe he just didn't know what to say. Sometimes they have to think about things for awhile. I hope he comes around.
I am getting ready for the NN conference, but I wanted to take the time to say - "you go girl" Keep up the good work, you are are worth it. Keep us updated!

#14 Henry G

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Posted 07 November 2009 - 12:22 PM

I have this bad feeling that XYREM is not meant for Narcolepsy. It is meant for Narco with CATAPLEXY.

If my "theory" is right, then people with Narcolepsy but NO Cataplexy being administered Xyrem nightly - will eventually end up suffering from the same fate our dear friend has. Whereas People with Narcolepsy AND Cataplexy won't.

I call it the "Gobbling up" effect. It goes something like this:

If the medicine you are taking has a definite role and your medical condition matches exactly that. Then the med gets 'used up' doing its role .. very little more like zero is left to turn against you.

But if the med is not 'used up' ... It may force your neural system to shape-shift to accommodate. Addiction takes place.

By addiction I do not mean functional dependance (ie without which you can do your daily chores)

But I mean the classic desperate signs like: exponential tolerance building,
taking the med outside it's time or purpose, mid-afternoon, to relax, get a buzz feel 'good' .. etc

So, If there is at least ONE person. With Narcolepsy only but no Cataplexy. That has been taking Xyrem regularly for at least (> 2 years) .. But never had problems with the classical addiction symptoms THEN my theory is VOID: Xyrem can be used safely for Narco-with-No-Cataplexy no probs + Please please Ignore everything I have just said then .. Can't help but wonder ..

#15 sleepless sleeper

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Posted 10 November 2009 - 12:23 AM

Henry, I am such a fan of your theories, and I think that they employ common sense beautifully. As to the scientific side? I don't have a clue, but it is so lovely to see you posting your theories again. I am absolutely overwhelmed with happiness to see this one. Thank you for sharing it.

#16 PWN in Deutschland

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Posted 10 November 2009 - 07:13 AM

interesting thoughts henry. the way i understand it, from discussions with docs, etc., xyrem works because it is able to cause your body to experience delta sleep. in PWN, (this info can also be found all over the web, including http://med.stanford....try/narcolepsy/) the brain does not correctly produce hypocretin which is a hormone or amino acid or something like that that allows the body to pass from REM sleep to delta sleep. delta sleep is the only type of sleep that allows a person to wake up and feel refreshed and normal, i.e. awake. with only REM sleep, we (PWN) wake feeling like we haven't yet gone to sleep. so the xyrem should work for all N, regardless of cataplexy. uhhhhh, btw, i have an MBA, which is light years from an MD, so if all of this is wrong... my bad. my medical expertise includes chicken soup for all that ales you. but i have done a lot of reading and the info above seems to echo a lot of classic N research.

anywho...

i eventually gave up on the 'i can do this myself because i am a strong woman' theory after i broke into a cabinet that i had locked my xyrem in and had given my husband the key to take to work with him. i called my doc and told him that i was 'concerned i might be having a problem'. i started a step down (instead of cold turkey) approach by dropping 3g per night until i was at 0. my last dose was 3 days ago. i have been taking diphenhydramine, a common OTC sleep aid (found in things like benadryl, tylenol pm, etc.) to combat the insomnia. i am now able to go to sleep without taking anything, but i wake up around 3a and have to take something or i stay up for 3 or 4 hours. i am now reverting back to a pattern of falling asleep around 10 or 11, brief waking at 3 until the OTC kicks in, and then sleeping until 5:30p the next day. my doc says that i should continue to sleep the day away until i can sleep without anything, OTC or otherwise, which he expects to last about 5-7 days. Once i can sleep through the night, i am going to start setting a morning alarm and taking nuvigil around 9a daily, which doc expects will start keeping me up and/or waking me earlier after about 7-14 days. my husband has taken the X out of the house to somewhere so i have no option to find it or break anything else in our home. i have also been switched to a different anti-depressant. so if all goes according to plan, i should be back to a normal, semi-functioning PWN within a month or so.

right now i just feel tired and annoyed and am crabby (which is both expected and normal). and i am turning to food for comfort which sux for my ever expanding butt. however, doc says all should be feeling much differently within 4 weeks and i promised to give him the benefit of the doubt. he promised me that if i am still feeling miserable after 2 weeks, we would try something else. so that is where i am at right now.

#17 Mirianda

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Posted 10 November 2009 - 09:39 AM

Congrats on getting help :) I have read through your post and I find you very courageous. I used to also think I can fight the sickness on my own without help but I know on the emotional side I have too much on my plate. So I want to see my Neurologist but the earliest he could see me was on december 14th and I took my appointment at the end of October but anyways keep us posted!

#18 sleepless sleeper

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Posted 10 November 2009 - 06:36 PM

PWND.- it didn't pull up the file.

you shouldn't jump on henry like that, and his theories are fantastic.
that said, i know that you are having a hard time with the xyrem, and i'm really sorry that you are. i think that you are doing a great job from what you tell us. i wish you the very best with weaning yourself from xyrem. it does take a strong person to do combat any addiction.


"... i have done a lot of reading and the info above seems to echo a lot of classic N research."
so has HenryG and many of us on here. keep in mind that some research presents as 180 degree turns to other published research. some research is offshoots of others, but with little twists, etc.

I feel a need to take up for HG because HenryG is brilliant, and I will always be a fan of his. He has taught me a lot, and I'll always be appreciative of him. That said, you sound great yourself. Most of us on here are.

#19 sleepless sleeper

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Posted 10 November 2009 - 06:57 PM

from the Xyrem site:

"Abuse of XYREM can lead to dependence, which may include craving for the medicine and severe withdrawal symptoms."

"XYREM is a Schedule III drug - which means that it has a moderate risk of dependence."
(also schedule I)
"Important Safety Information 1. XYREM® is a controlled substance. Controlled substances are medicines that, if abused, may lead to varying degrees of physical or psychological dependence. XYREM is a Schedule III drug — which means that it has a moderate dependence liability."

http://xyrem.com/hea...-dependence.php


you did so much research, but did you contact these people? it may be worth a visit



"so the xyrem should work for all N, regardless of cataplexy" <---------- this is incorrect. go to the xyrem site and read their trial info. also, read stories of people's experiences on here. fortunately, it does work for some.

#20 Saraiah

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Posted 10 November 2009 - 07:11 PM

i eventually gave up on the 'i can do this myself because i am a strong woman' theory after i broke into a cabinet that i had locked my xyrem in and had given my husband the key to take to work with him. i called my doc and told him that i was 'concerned i might be having a problem'. i started a step down (instead of cold turkey) approach by dropping 3g per night until i was at 0. my last dose was 3 days ago. i have been taking diphenhydramine, a common OTC sleep aid (found in things like benadryl, tylenol pm, etc.) to combat the insomnia. i am now able to go to sleep without taking anything, but i wake up around 3a and have to take something or i stay up for 3 or 4 hours. i am now reverting back to a pattern of falling asleep around 10 or 11, brief waking at 3 until the OTC kicks in, and then sleeping until 5:30p the next day. my doc says that i should continue to sleep the day away until i can sleep without anything, OTC or otherwise, which he expects to last about 5-7 days. Once i can sleep through the night, i am going to start setting a morning alarm and taking nuvigil around 9a daily, which doc expects will start keeping me up and/or waking me earlier after about 7-14 days. my husband has taken the X out of the house to somewhere so i have no option to find it or break anything else in our home. i have also been switched to a different anti-depressant. so if all goes according to plan, i should be back to a normal, semi-functioning PWN within a month or so.

right now i just feel tired and annoyed and am crabby (which is both expected and normal). and i am turning to food for comfort which sux for my ever expanding butt. however, doc says all should be feeling much differently within 4 weeks and i promised to give him the benefit of the doubt. he promised me that if i am still feeling miserable after 2 weeks, we would try something else. so that is where i am at right now.



To my Deutschland friend: I am SO PROUD OF YOU! And so deeply moved by your courage, and so deeply relieved to hear that you are ok, and moving forward. I have been terribly worried for you. GOOD FOR YOU!! I'm terrifically glad that you were able to tell your doctor and enlist the real help of your husband.

All of this hard stuff each human being ends up having to move through (and some human beings get waaaaay more hard stuff than their fair share) is so da**ed difficult, so terribly hard. But for me at least, each of these kinds of struggles that are so raw and so frighteningly overwhelming later have become a truly amazing source of courage, as well as a sort of "how to" for working through the next potential source of disaster and tragedy. Not only in the "Well, I made it through kicking the Xyrem, and this next problem can't be anywhere near that hard," sense, but also in the "I did X and Y and Z to get through the Xyrem addiction, so I know I can do X, Y, Z, and probably A, B, and C to get through this next really rough thing."

I'm convinced that those of us who have had more overwhelming difficulty in our lives than most folk tend to be those who are most deeply wise. Not because we were born with more aptitude for sagacity; instead, we tend to develop more deep wisdom just because, in absolute do-or-die necessity, we've had far more opportunities to begin to develop it, and to hone it like creating an iron chisel through fire. Once when I was a teenager, I got to literally beat a round iron bar repeatedly after heating it red-hot, hammering away, heating again, and on and on, till it was this lovely excellent sharp chisel when I was done. I still have it in my toolbox and I delight in using it whenever the occasion presents itself. I never forgot the making of the chisel, because that literally firey, violent, and dangerous process reminded me of myself. I've been beaten in so many endless sorts of ways, over and over; and I have become a chisel of choice for teaching some kinds of healing.

So, my Deutschland friend, what kind of beautiful instrument have you already become? And do you already have in mind the new gifts with which you might emerge from this struggle? Because anybody who first attempts to break into a locked cabinet for a drug, and then recognizes she needs more help and then goes out to get it, is already a woman with great gifts, and more in the making. As I am positive you know at the most deep level at this point, asking for needed help is one of the strongest and wisest things a person can do.

Saraiah