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 shit 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.
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Where's the research to back this up?
ReplyDeleteGet a glucose monitor.
ReplyDeleteDo it yourself.
Oh wait, you'll need a friend since you'll be in a coma....
And for the record: the distributors of Xyrem are admitted liars and criminals.
ReplyDelete"In 2007, the makers of Xyrem, Orphan Medical, which is now part of Jazz Pharmaceuticals, pleaded guilty to a felony charge of marketing Xyrem for unapproved uses. "
In my opinion: this behavior really doesn't indicate a great amount of concern for other people's brains.
HELLO!!! Amen to that Heidi!! I don't forget charges like that, and many say that they are unrelated to their situations...I just say huh?!?! I believe that they have zero concern for our wellbeing, Xyrem=cash. nothing more, nothing less.
ReplyDeletevia con Dios
Ja
I really like a lot of your hypotheses, and will be tested soon for food intolerances (was dairy intolerant as an infant, was just told I should outgrow it and have eaten it all along and had more issues pile up...), but I'm not sure about this one. My neuro told me that Xyrem is metabolized by every cell in the body, not something harsh that needs to be processed through the liver. I of course took his word for it since it seemed he'd looked into this and had an answer for me, but I'm wondering where you got your info on Xyrem metabolism/filtering out of the body? I'll call BS on the neuro if he's giving advice based on misinformation...
ReplyDeleteXyrem does not bypass the liver. Those with acute renal failure were shown to metabolize Xyrem at a slower rate than "healthy" controls (32 minute half -life compared to 22 minute half-life per dosing). Additionally, Jazz Pharm. recommends that those with liver failure or liver disease should take only half the normal dose.
ReplyDeleteI told you she was sharp.
ReplyDeleteI'm pretty sure if I were demonstrably wrong- their lawyers would have tagged all over me by now...
Heidi, thank you. When can I come to visit you and spend a month in your library? I'm a normal person I swear, mostly.
ReplyDeleteIf you're ever in Seattle, just let me know. I am always here...
ReplyDeleteAnd I really don't hang out much with normal people.
For the record, I am not against drugs. I like a lot of drugs. Ones that help my symptoms or are fun.
ReplyDeleteI do not like Xyrem for this reason: the benefit does not outweigh the cost. It can't. The cost is too high. GHB is highly addictive. The dopamine surge it creates is bigger than anything you will ever find in real life. You will want it more than anything else on the planet. And when it doesn't work for you anymore, and you have to go off it- your brain will never be the same.
Don't eat sugar and save your brain cells for better mind-altering substances.
Though I have not sought out Xyrem, I've done some reading about it. You make no mention of cataplexy in your post. When I've read about Xyrem it has been as a treatment of cataplexy, not narcolepsy.
ReplyDeleteI am on a low-carb diet, I aim for zero carbohydrates. I go for long stretches with zero carbohydrates in my diet. Throughout this period, I still experience narcolepsy and cataplexy symptoms. The symptoms of my narcolepsy were lessened, but still present. Cataplexy remains a problem with a low or zero carb diet.
My experience seems to contradict your post, my blood sugar during my zero-carb stretches is already as low as I could manipulate it to be, yet I still experience narcolepsy and cataplexy.
To focus a bit on Cataplexy, which Xyrem is prescribed to counteract. Cataplexy is caused by the release of the chemical that paralyses voluntary muscles while dreaming, so that dreams are not acted out. Cataplexy is when this chemical is released not while dreaming, but also during wakefulness, triggered by emotion.
Narcoleptics also have altered night-time sleep, with a lot of REM, a lot of dreaming goes on. Xyrem works to take sleep out of the REM and into the sleep where dreaming doesn't happen. During the day, less of the chemical that causes cataplexy is around, and less or no cataplexy is experienced.
Honestly, I would kind of like Xyrem just so I wouldn't dream. I am so sick of dreaming it isn't funny. Sure, Xyrem is addictive, but plenty of things are addictive. Caffeine is addictive, tobacco is addictive, behaviors are addictive. The trouble is when something is as addictive as Heroin, Cocaine, or Methamphetamine. No one turns to prostitution for coffee or cigarettes, they just suffer the withdrawal and return to 'normal'. Generalizing addiction is not helpful, GHB, the street analog to Xyrem, seems to be used occasionally, there are people who become addicted, but there are always people out there who do things to themselves.
The beef I have with Xyrem is that they can use the system to make something so freaking expensive. GHB is way cheaper than Xyrem, I would never take it as a street drug, but seriously if it worked and the safety could be demonstrated, the cost and hassle involved would make it tempting.
I have heard that marijuana can be used to get a similar effect as Xyrem. This was in the entrails of some forum though and the post was brief. I have heard though that stoners don't dream, this seems to fit the targeted response.
Yeah, the worst thing about xyrem is the price... sheesh.
ReplyDeleteXyrem is more addicting than Heroin or cocaine.
You clearly have not read my stuff. Being sugar free is not enough. If you are not gluten-free then you are still producing too much insulin and screwing up your whole glucose metabolism. Read my story, I was carb free for a long time and still progressed to dementia.
Gluten causes paralytic sleep and raging REM.
If you have having insomnia and light, fractured dreams after detoxing from gluten- you also have strep autoimmunity and need to change your dental care regimen.
And whatever you read about marijuana is nonsense, trust me, stoners have dreams.
Think about it people-
ReplyDeleteThe only reason they have permission to give you Xyrem, is because THEY DON'T HAVE ANYTHING THAT ACTUALLY WORKS.
Brand New Research verifying this hypothesis:
ReplyDeleteINSULIN SENSITIVITY IN NARCOLEPSY AND THE EFFECT OF SODIUM OXYBATE AS MEASURED BY A HYPERINSULINEMIC-EUGLYCEMIC CLAMP
Introduction: Hypocretin deficiency causes narcolepsy, a condition characterized by excessive daytime sleepiness, cataplexy, and fragmented nocturnal sleep. Co-morbid obesity is present in more than half of narcolepsy patients. While a higher prevalence of the metabolic syndrome and Type 2 Diabetes Mellitus (T2DM) has been reported in narcolepsy, recent studies could not detect differences in insulin sensitivity between patients and controls. However, none of these studies applied the gold standard, i.e. the hyperinsulinemic-euglycemic clamp, to measure insulin sensitivity. Therefore, we performed a study using this gold standard to quantify insulin sensitivity in both narcolepsy patients and individually matched controls. Additionally, we investigated the effect on insulin sensitivity of three months of treatment with sodium oxybate (SXB).
Methods: Nine hypocretin deficient patients with narcolepsy-cataplexy (seven males), and nine sex, age, body mass index, and fat mass matched controls were enrolled. A hyperinsulinemic-euglycemic clamp was performed at baseline (40mU/m2/min insulin infusion for 2 hours to attain a
circulating insulin level of about 40mU/L). In seven patients (five males)a second hyperinsulinemic-euglycemic clamp was performed after three months of treatment with SXB.
Results: Glucose disposal rate per unit serum insulin was significantly higher in narcolepsy patients compared to individually matched controls indicating higher insulin sensitivity in patients. Narcolepsy patients lost a substantial amount of weight (mean of 5.2 kg) after 3 months of treatment with SXB. Moreover, SXB treatment lowered insulin sensitivity in narcolepsy patients to levels comparable to those of control subjects.
Conclusion: Our findings suggest that narcolepsy patients are actually more insulin sensitive than body weight and fat mass matched controls. Therefore, any potential tendency to develop T2DM probably stems from their propensity to grow obese. SXB decreased weight, and normalized
insulin sensitivity.
I have a problem with Xyrem in that since I started taking it on June 1 2012 until last night I only had about 6 good day afters where I was not a zombie. Now the maximum dose of 4.5 grams usually will not put me to sleep. Any thoughts on that. I just found your sites and am going to read everything because I really hate this zombie I have become.
ReplyDeleteI do not give advice on technicalities of Xyrem. That's between you and your doctor.
ReplyDeleteBut the effect of Xyrem is to put you into ketosis, which can more easily and reliably be attained through diet restriction.
Funny they don't tell you that...
Hi Heidi, I just emailed you. I'm the one with the above post. Thanks for all your great info.
DeleteFor those of you hitting on this post from outside-
ReplyDeletemy Narcolepsy research is here: www.zombieinstitute.net
this blog covers lots of other topics too.
Well, I have Narcolepsy with cataplexy and am type 2 diabetes. I also take xyrem and have done so for a long time.
ReplyDeleteMy experience somewhat contradicts this article. I am not more sensitive to insulin after taking xyrem.
My liver is able to compensate when I go low, even while on xyrem.
Hey I read bits and peices ... so what you saying is if you are control eating by having sugar free and gluten free us Narcoleptics will have more energy and wont need to take xyrem ?
ReplyDelete