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How Xyrem Probably Works


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#1 Heidi L

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Posted 23 September 2009 - 04:18 PM

Basically it’s the Coma Diet.
Seriously.

Orexin cells are glucose sensitive.
When blood sugars rise, orexin production decreases.
When blood sugars fall, orexin production increases.
Narcolepsy causes the loss of these cells, and an oversensitivity to blood glucose.
Narcoleptics are highly sensitive to small fluctuations in serum glucose levels, enough that the glycogen released by the liver can raise it enough to cause symptoms.

Xyrem is a powerful central nervous system suppressant. It shuts down your brainstem.
Your brain finds this alarming and takes over your liver to clean it out of your system.
While your liver is otherwise occupied, it cannot produce glycogen and store it.
The following day your blood sugar levels are lower, so your orexin levels are higher and your symptoms are less severe.

What you’re doing is poisoning your liver to compensate for the fact that your brain is overdosing on sugar.
In the diabetic world this is known as shocking the liver for glucose control. They use alcohol instead of GHB though- it does basically the same thing with less fatal effects. It is used sometimes in emergencies, as part of a protocol to reduce extremely high blood sugar. It is frowned on as a regular form of treatment, however.
· It’s unhealthy. Dumping poison into your system may provide some indirect symptom relief, but not surprisingly- isn’t good for your liver.
· It’s inefficient. You can accomplish the same thing by not putting all that glucose into your system in the first place.

Just about any other potent neurotoxin would do the same thing. Except most of them kill you instead of just knock you out. The narcotic effect is probably just a nice bonus. You get to sleep through your detoxification instead of suffer.

Moreover, this does nothing to alleviate the underlying neurodegeneration of your orexin cells. If the medical establishment knew this was the mechanism (they have no idea what it does, but they give you the dangerous sh-t anyway), it would never have been approved.

Seriously, shutting down your brainstem is not a prudent form of blood sugar control.
It’s the physiological equivalent of setting your house on fire because you’re cold.


For more information about the metabolic basis of narcolepsy and effective diet therapy- please visit my website.

#2 Saraiah

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Posted 23 September 2009 - 05:09 PM

Heidi, your explanation of how Xyrem works is quite different from the research on it that I've been able to find. I've looked at your website, and not found any articles that can substantiate what you're arguing here. Please let me/us know where to find the medical journal articles that are the basis for your explanation.

Thanks!

Saraiah

#3 Jenn23

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Posted 26 September 2009 - 11:46 AM

I'd like to see evidence of your claim. Very interesting.
I thought Xyrem was processed through your body with little damage to organs and released 95% as carbon dioxide and 5% in urine.

#4 jenji

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Posted 27 September 2009 - 11:01 AM

Stu, please SPAM that individual.

#5 allisonNYC

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Posted 28 September 2009 - 04:28 PM

I'm not on Xyrem, I am currently taking Ritalin; however, I find that staying awake is a balance between diet and medication. I read parts of your website and find a lot to be true about crashing after meals. I get frustrated though because it seems to happen with all foods, gluten or no gluten. If I eat a big meal, I'm doomed for the rest of the day (and by big, I mean a moderately-sized salad). Basically I have to eat bite-sized snacks throughout the day to make it through; one crash and I'm done for. So I find all the statements you made about Orexin pretty facinating.

My question is, what diet do you find works best? I find eating incredibly small meals with some sort of protein is the way to go. I generally eat a handful of almonds and a cup of berries for breakfast. A string cheese for a snack. Chicken salad and 4 g-free crackers for lunch. A gluten free cookie in the afternoon. Seafood or chicken and veggies for dinner....and LOTS of water. So I guess I basically try to eat the way most fad diets tell people to eat to loose weight. Before I had zero motivation to work out...my doctor said it would help out tons, but how can it help if i get so unbelievably tired after, and focing myself to workout is such a chore?! I started eating like this and its like I became a new person. I get up every morning to work out now, which in turn makes me sleep through the night! Its hard and I'm constantly persuaded to fall away from these healthy habits (living around all sorts of fantastic food is hard!!), but if I stick to it, I see an instant change in myself. Perhaps all narcoleptics just need to be the healthiest people on the planet with diet and exercise and that would solve all our problems!!

#6 Saraiah

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Posted 28 September 2009 - 04:57 PM

Yesterday, at an in-person PWN support meeting, I learned that some doctors advise PWN who want to go off all meds for a period of time (say, during the first trimester of pregnancy) to eat ONLY protein during the day when they must stay awake. The woman whose doctor had explained this elaborated that, for the first 3 months of pregnancy, she was advised to avoid all carbohydrates, even lettuce and other veggies, during times of the day when she needed to stay awake. People in the support group worried that such a diet might be ill-suited to providing her body the nutrition that the growing baby would need. But it did get me thinking.

Once I can manage a trip to the grocery store to get things like chicken and tuna and tofu (are there carbohydrates in tofu?), I was going to give the idea a try. I'm currently on 9g Xyrem per day, and 400mg Provigil per day, and I can't stay up longer than 4 hours at a time without feeling desperate to sleep and becoming nauseated. Yesterday, for the support group meeting, I deliberately took 400mg Provigil at 7am, and then (I know, illegally and against doctor's orders) I took another 400mg right before the support group meeting at 2pm. And even though I'd taken a 2 hour nap in the morning, by the time I got home around 6pm I could hardly focus on what people were saying, and all I could think about was "I. MUST. SLEEP." The point being that if I could find anything at all that might extend my wakefulness, I'd be beyond grateful. Because at this point, I have no idea how I'm going to ever go back to working full-time! Not to mention that even around the house, I get almost nothing done right now.

Of course, I know there are lots of stimulants that I haven't yet tried, so maybe one of them will be the answer. But it sure would be nice if I could partially control the exhaustion by what I ate. (And yes, I've had a colonoscopy and been tested for Celiac, and I don't have it.)

#7 Bafflegab

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Posted 30 September 2009 - 07:19 AM

I agree with Jenji. Enough is enough.

#8 Horizontal Hold

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Posted 05 October 2009 - 12:00 AM

Heidi, you do PWN a tremendous disservice to post this or any other unproven theory as if were 99% fact. This is a support forum for patients, not a scientific think tank. I'm especially concerned that you're alarming people who are relatively new to narcolepsy and don't yet know enough to put your claims in perspective.

Your biology background may just give you enough knowledge to be dangerous.

I've been around too long to buy any of it for a second. If what you propose were true why haven't there been a flurry of reports of liver damage among Xyrem patients? The FDA pulls medications all the time. There are plenty of PWN who've been taking Xyrem since trials began in the late 1990s. A fair number of this group were in the earlier GHB trials and have 20+ years of combined GHB/Xyrem use. I keep in touch with a few of these pioneers; none has a liver problem.

You say that after a taking Xyrem, "The following day your blood sugar levels are lower, so your orexin levels are higher and your symptoms are less severe." This can't possibly explain the benefits of Xyrem to those of us who have narcolepsy with clear-cut cataplexy - the "zero hypocretin/orexin group". And for the rest, a leading N expert said not long ago that there is no evidence so far linking narcolepsy without cataplexy to the hypocretin system.

Are you suggesting that Xyrem actually contributes to the loss of hypocretins cells? The hypocretin studies indicate otherwise. With rare exception, the hypocretin studies showed two distinct groups: the narcolepsy with cataplexy group having no detectable hypocretin levels and the narcolepsy without cataplexy group having normal hypocretin levels. If what you suggest was correct the hypocretin levels of the narcolepsy without cataplexy group would have been all over the charts, reflective of individuals at various stages of HCRT cell loss.

I'm just a patient who tries to keep up with the research. I was compelled to respond because no PWN should be discouraged from taking Xyrem on the basis of Heidi's theory.

Horizontal Hold

#9 ejohnson22

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Posted 05 October 2009 - 08:50 AM

This makes me very upset as well! Xyrem is the first of several drugs that has exctually helped me with my Narcolepsy. I have never felt better and been more awake before. I think we need more information straight from sources!

#10 sleepless sleeper

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Posted 26 October 2009 - 02:37 AM

HAHAHAHHAHAHA o geesh. Well, I can't leave this up here, but I'll post for a short time. i'll retype and repost

#11 sleepless sleeper

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Posted 26 October 2009 - 02:47 AM

But, people, if you know that she is not to be taken seriously, why ask to have her banned?

get over it

be tolerant


we are all messed up in one way or another.

None of you has tried to be nice to her. She is pwn the same as the rest of us. Messed up sleep causes messed up thinking. She cares enough to want to share. Just freaking ignore it or leave a reply for newbies to ignore it.

It's not as though she's screaming Obama sucks and insurance reform as presented is garbage, which I can personally guarantee REALLY ticks a lot of pwn off.

She is speaking what she believes is gospel. I can name a few others on here that do the same thing, but all of us need a place to go. Until she begins threatening people, leave her be. Be careful what you ask for, because banning a pwn from this site will present a very nasty picture.

#12 sleepless sleeper

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Posted 26 October 2009 - 06:11 PM

i'm bumping this so you can see my post before it goes away. not the one immediately above this one. it is two above this one.

#13 Saraiah

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Posted 26 October 2009 - 08:51 PM

i'm bumping this so you can see my post before it goes away. not the one immediately above this one. it is two above this one.


Sleepless, why are you taking your factual and extremely helpful post about Xyrem away? I'm sure you've got a good reason, I'm just clueless as to what it would be. If you really do need to take the post down, is there a way that someone else could post the same general info who feels ok about posting it? I'd be glad to do it myself, except that I'm no chemist and no biologist and no medical doctor, and so I don't know anything about this stuff. Just asking - I very much value your posts because they are factual and helpful and funny, and what better combination could there be?

Warmly,
Saraiah

#14 sleepless sleeper

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Posted 26 October 2009 - 09:01 PM

Sleepless, why are you taking your factual and extremely helpful post about Xyrem away? I'm sure you've got a good reason, I'm just clueless as to what it would be. If you really do need to take the post down, is there a way that someone else could post the same general info who feels ok about posting it? I'd be glad to do it myself, except that I'm no chemist and no biologist and no medical doctor, and so I don't know anything about this stuff. Just asking - I very much value your posts because they are factual and helpful and funny, and what better combination could there be?

Warmly,
Saraiah


If someone wants to look up the basic info and repost in their words, then that would be fine.

#15 Kathleen

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Posted 28 October 2009 - 09:05 PM

Sleepless,

I hope you decide to leave your post there. I wouldn't dream of taking it down. You are right, everyone is entitled to their own opinion. That is what I like about this board, is that it is an open discussion & we are all able to make up our own minds. As long as we are respectful to each other, we can disagree.

I do not know all the biochemistry Xyrem, what I do know is that Xyrem works for me, my doctor know that it works for me, enough said.

Glad to see you here.

#16 Mee

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Posted 27 January 2010 - 09:55 PM

I agree with Kathleen and the previous posters. If anything, this person initiated a good conversation and debate. Interesting that the first poster never posted back to support their claims. Enough said. :)
-Mee



Sleepless,

I hope you decide to leave your post there. I wouldn't dream of taking it down. You are right, everyone is entitled to their own opinion. That is what I like about this board, is that it is an open discussion & we are all able to make up our own minds. As long as we are respectful to each other, we can disagree.

I do not know all the biochemistry Xyrem, what I do know is that Xyrem works for me, my doctor know that it works for me, enough said.

Glad to see you here.



#17 micro2000

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Posted 19 February 2010 - 12:40 PM

This explanation is not how GHB works, nor the pathogenesis of narcolepsy. It is true that narcoleptics are more sensitive to the sedative potential of food, this does not mean that dietary changes produce any cure.

#18 Henry G

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Posted 19 February 2010 - 08:24 PM

This explanation is not how GHB works, nor the pathogenesis of narcolepsy. It is true that narcoleptics are more sensitive to the sedative potential of food, this does not mean that dietary changes produce any cure.


no but some believe , have tried and have sworn by it - that a gluten-free diet reduces symptoms.

I can't vouch for it - because I find any form of diet extremely complicated to follow

apart from the Haye's Diet - which sometimes I follow only because I feel sort of lazy cooking starchy food: rice, noodle, potatoes, pasta

Hayes' Diet (or something) .. goes something like this:

Don't mix your meat with carbs. But mix your meat with veggies - or - mixing your carbs with veggies is OK.

I do that for like 1 month, and .. well - I just lose weight (a lot of it in fact).

But I hate diets anyway cos life is complicated .. if I was married with a health nutritionist or had loads of money and had chef attendants - fine, ..

I 'seem' to be a very atypical narcoleptic. Which is kinda frustrating as sometimes things may not apply to me.

I don't have cataplexy. Which means I may use 'shock', 'fear', strong emotional motivators as a tool to 'wake up'. Watching very funny films or strong intensive action like or violent computer games at times.

My narcolepsy is v non-psychosomatic. There is an inverselly proportional relationship between 'health' and 'narco'.
The healthy stronger happier I am - the worse and most intensive and prolonged the narco spells.

I don't like sweets: muffins, chocolate, cakes (yeeeurgh) .. anything cake + sugar

I don't crave sweets. Although I don't mind 'sweet drinks' but really meaning:

I don't crave carbs. Can't stand pasta, bread - I rarely buy bread.

I crave salt, spice, protein.

My narcolepsy is daily - so EDS always comes big time - always there 365 days of a year.

Sleeping during the day, cat naps, makes absolutely NO difference.

I can't stand my UK doctors they are bunch of useless, unprofessional, unqualified, corrupt idiots.

I feel for those that suffer of Narco and are in the hands of the UK National Health Service.

Sorry talking too much, oops .. (but clicking "send anyway")

Lastly, inducing REM-free sleep on me .. does not vanquish EDS completely, sometimes (mostly) makes no difference.

But what inducing-REM free can do sometimes, is make me feel less completely-fatigued, the EDS would still be there, but sometimes what could happen is that I would at least have less darker circles around my eyes less panda-like.

hugs