Garch2010

Alternative To Xyrem Possibly?

39 posts in this topic

Interesting stuff here.

Sorry to butt in, perhaps changing topic direction?

I think where I'm going fits this topic to a point though so here goes...

Have either, or any, of you tried Amino Acids combinations like 5-HTP, Taurine, L-theanine with of course Vitamin/Mineral additions? (basically anti-depressant like, yet very different, serotonin and gut to neurotransmitter supplements)

That is, as perhaps a 'cure'-like (taking a course of such, to eventually get off of it perhaps months later and then find yourself better off for the long term); or even as a 'symptomatic'-like addition (taking regularly with benefits more than outweighing the side-effects)?

My entire concern with any and most all of the 'medications' and, or even 'supplements' (yet anything, supposedly, 'natural' to me, appears likely to be safer) is that once your on such and things are (get) re-wired, will returning to the prior point be possible?. If my understanding of most any of these is correct, the re-wiring happens and things are not necessarily gonna re-wire back to what it was and more than likely the re-wiring would possibly or very likely go beyond (negatively) where such was prior...

Will that re-wiring be more beneficial or more risky after you stop; or to say simply, when the day you can not take more of such medication or supplement (for whatever reason; ex. price, long-term side-effect creating worse other issue/s, change in 'proprietary' mix or disappearance of it), how much worse or better will one actually be...

Of course none of that is not easy to determine, as 'one' must really find a balance that benefits 'them' alone, which requires real observation or inner-connectivity with self-awareness and reflection by 'that person' alone.

No other, one, is going to ever actually know what works for you or any other, they may be able to direct or give advice yet, only you can actually know yourself and your own feelings.

With that all said, any one want to comment with their own perhaps trial and/or regular experience, with such or such sort/s of 'so-called' supplements?

Hope my words are interpretable and also that they are not offensive to any (such is not my intent)...

I'm all for minimising use of powerful psychotropic / neurotrophic medication. However, remember N + C is due to a permanent loss of specific neurons in the brain, in other words an irreversible neurological degenerative pathology - just like Parkinson's and Alzheimer's. Vitamins etc might be a reasonable adjunct, but that's probably the extent of benefit.

N+C is not a psychiatric diagnosis where behavioural talk therapies have shown overwhelming efficacy, other than as an adjunct, specifically readjustment behavioural therapy.

If someone was a Type1 Insulin Dependant Diabetic, would one recommend a patient minimise use of injectable insulin and try some vitamins. Same arguments apply to N+C, Ideopathic Parkinson's etc.

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I'm all for minimising use of powerful psychotropic / neurotrophic medication. However, remember N + C is due to a permanent loss of specific neurons in the brain, in other words an irreversible neurological degenerative pathology - just like Parkinson's and Alzheimer's. Vitamins etc might be a reasonable adjunct, but that's probably the extent of benefit.

N+C is not a psychiatric diagnosis where behavioural talk therapies have shown overwhelming efficacy, other than as an adjunct, specifically readjustment behavioural therapy.

If someone was a Type1 Insulin Dependant Diabetic, would one recommend a patient minimise use of injectable insulin and try some vitamins. Same arguments apply to N+C, Ideopathic Parkinson's etc.

Yes, this is very true. My boss has RA, and used to get super expensive drugs to control it (not as expensive as Xyrem though, but expensive enough to be on the special case tier and have co-insurance capped at $75 / month.... yet Provigil wasn't, so it was costing almost $400 a month in co-insurance...and its the preferred brand, so 35% co-insurance. While Nuvigil is the non-preferred brand, so 65% co-insurance...its cheaper, so only about $200 a month in co-insurance. Though shortly after I started taking Nuvigil, it was moved to the special tier...so I was only paying $75/month for it. But, I've digressed). And, eventually the drugs stopped working....so with the help of his wife, he drastically changed his diet to help control his symptoms....and it was more than just gluten that he had cut, night shade vegetables/fruits/spices were also found to be a problem (apparently not that uncommon with RA & inflammation).

However, after about a year and half....the diet change alone wasn't keeping his symptoms under control, so he finally realized he needed to go back to see his doctor. At which point he was giving Prednisone, starting at 8x the normal dose and tapering off over 2 weeks. Normally used as a "bridge" medication until the symptoms can be managed effectively by the next new treatment. In his case, the intent is while the major diet changes have cut down the rate of his inflammation, he'll do the Prednisone treatment at some regular interval to knock it down...kind of like as augment to the diet changes. He also lost a ton of weight and was able to become active again as a result of the diet changes.

Though when he's just started the Prednisone, he's decided that's an acceptable time to go off his diet and indulge a little bit. He likes the smoked tabasco sauce....so he'll have that on his lunch near the start of the treatment. Though he hasn't done a belly bomb yet....though when he was first starting....his order was weird....belly bomb with no bun, no additions, and grilled vegetables instead of the normal menu sides. Though the cajun spices they use on the burger and the peppers that are among the grilled vegetables were eventually found to be a problem, so he doesn't do that anymore. Probably not worth it to him to indulge in that anymore. Also probably not that different than his normal lunch at work....which is some grilled patty and some grilled vegetables....so basically what he would get as his Belly Bomb, but without the nightshade seasonings and vegetables.

They've pretty much become the family that brings their own kitchen whenever they travel. It used to be he could eat anything he wanted, but his wife has a number of food allergies. But, all his kids also different food allergies....he was the go to guy if you wanted to find what things in the grocery store were free of X or Y or Z. Though the new expanded grocery store has a gluten free section and shelf labels to indicate other items as gluten free. Though wife is allergic to all dairy, and some of his kids are allergic to soy. There's a grain allergy too (not just gluten) in the mix.

I think I need somebody in my life to help me attempt the kind of diet change he did. At first he would leave certain things out to see if it helped, but then his wife made him go the other extreme....and slowly add things in to see if it was safe or not. Used to joke when he had to call his wife if it was okay to eat this or that. Now we almost never go out to lunch as group anymore. No more free lunches either....since he's the main person a vendor would want to take out to lunch.... He has signing authority to 10k, and he reports directly to the CIO who can sign off on upto 250k. Because anything over 250k needs to go through the state government (even if the purchase doesn't involve state funds.) Though they were working on change that rule. Of course, a few years ago the department director wasted $2million+ in $5k increments, plundering budgets that were supposed to be for other projects. He had taken over our department, because our director position was vacant and he was told that his expansion plans couldn't be done and he had to work with a unit in our department. Taking us over made more sense to him. One of my functions, he only spent $30k in resources to keep it running....poorly, and banned us from making any improvements. He got it outsourced, we now pay somebody else $2million a year to do it. But, he made such a mess of things that the state brought in various auditors to look around....and we're slowly moving back to where things were before the take over. He was transferred to another department and forced into phased retirement. Now I'm doing more of that in my job, since not all the functionality that people except is available from the vendor....and I'm the only one. Hence in a previous posting...if I should ever decide to get a different job or just stop working...the boss wants extra notice so he can start looking for a new job as well. Since we'd probably have to hang the out of business sign for the University....though I'm starting to hear that things fell apart quickly while I've been away around the NN conference (I took yesterday off as well.) When I got up, I thought about heading in earlier than usual...but now I'm not sure I want to.

Anyhoo, I was never very active before my N became such a problem...but I've been thinking that someday I might want to become more active than I've ever been....

The Dreamer.

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I'm all for minimising use of powerful psychotropic / neurotrophic medication. However, remember N + C is due to a permanent loss of specific neurons in the brain, in other words an irreversible neurological degenerative pathology - just like Parkinson's and Alzheimer's. Vitamins etc might be a reasonable adjunct, but that's probably the extent of benefit.

N+C is not a psychiatric diagnosis where behavioural talk therapies have shown overwhelming efficacy, other than as an adjunct, specifically readjustment behavioural therapy.

If someone was a Type1 Insulin Dependant Diabetic, would one recommend a patient minimise use of injectable insulin and try some vitamins. Same arguments apply to N+C, Ideopathic Parkinson's etc.

Well, all narcolepsy treatments are aimed at the symptoms, not the cause, due to the fact that hypocretin cannot pass the blood brain barrier. I do find 5-HTP helps me sleep. However, I'm beginnign to question whether it is worth it or not because I am having severe hypnopompic hallucinations on it. I haven't had them in earnest for a while, due to the stimulants. Last night, I awoke to use the restroom and nearly had a heart attack. I have a poster of Sheldon on my door that says Bazinga. But when I woke up, it instead said Belial in some angular runic script, and there was a horned demon on the door that seemed to slide at me through space and time. Oh yeah, and the whole room was on fire.That's the last time I listen to Celtic Frost before bedtime!

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Well, all narcolepsy treatments are aimed at the symptoms, not the cause, due to the fact that hypocretin cannot pass the blood brain barrier. I do find 5-HTP helps me sleep. However, I'm beginnign to question whether it is worth it or not because I am having severe hypnopompic hallucinations on it. I haven't had them in earnest for a while, due to the stimulants. Last night, I awoke to use the restroom and nearly had a heart attack. I have a poster of Sheldon on my door that says Bazinga. But when I woke up, it instead said Belial in some angular runic script, and there was a horned demon on the door that seemed to slide at me through space and time. Oh yeah, and the whole room was on fire.That's the last time I listen to Celtic Frost before bedtime!

Oh that sounds terrible!!! noooo 5-HTP for me!! I am worried one night my dog is going to be a demon trying to eat my face or something! So glad Xyrem keep my SP/HH at bay... I could not handle that!!

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I have this really great book that goes through a lot of different vit/min/herbs/supplements to help with the symptoms of N... Along with different times of the day to eat certain food and when to take the vit/min ect... What makes it even more interesting is it tell what each supplement helps with and how/why it helps.

Once I move into my new house and get settled I plan on following more of their suggestions, along with Xyrem (sorry no healthy alternative for someone who can achieve SWS on my own)

I believe along with natural remedies, good food, and exercise... things will be better, but sorry no cure... cant reverse brain damage! Why can people not understand this! :blink:

Any how, I promise I will post about this but its going to be a dozy of a post and I gotta say I am not up for it right now! lol

Here is what I have done so far,

Calcium + Magnesium 2,000 mg, before bedtime (if not on Xyrem) I take it 3 hours before bedtime- it has helped with my shakes!

Omega-3 fish or flax

b complex + extra b6 200mg

Vit C w/ bioflavonoids 2,000-6000 divided doses

Vit D 400 mg

Vit E 200 a day or 400 every other day

and Zinc

Take supplements with 8oz glass of water to aid with movement and digestion

Mid-day meats, cheese, nuts, seeds, soy

Anytime- leafy green veg, sea veg, and brown rice

Evening meal- carbs! (fruits, veg, legumes, whole grains, and pasta)

Avoid Alcohol and sugar

reg exercise

and 45 min nap mid afternoon - I don'g get to do this but the book says to.

These are just the things I have started to do and I gotta say Ive been feeling better then I have in awhile... no if my stomach would just get with the program!!

Other things I have not tried but are suggested

Choline 300mg

Chromium picolinate 100mg

coenzyme Q10

free form ameino acide

l-glutamin- empty stomach with vit b6 100mg and vit c

l-tyrosin

nicotinamide adenine dinucleotied

octacosanol 100 mg

you can see why I havent tried any of those, cuz I need to figure out what the hell they are! and make sure they can go with my other meds.

also

Gutukola and st. johns wort (not to be taken with stimulants) and ginkgo bioba

Thats all Ive got for now :huh:

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Quote - Garch2010

"I'm all for minimising use of powerful psychotropic / neurotrophic medication. However, remember N + C is due to a permanent loss of specific neurons in the brain, in other words an irreversible neurological degenerative pathology - just like Parkinson's and Alzheimer's. Vitamins etc might be a reasonable adjunct, but that's probably the extent of benefit.

N+C is not a psychiatric diagnosis where behavioural talk therapies have shown overwhelming efficacy, other than as an adjunct, specifically readjustment behavioural therapy.

If someone was a Type1 Insulin Dependant Diabetic, would one recommend a patient minimise use of injectable insulin and try some vitamins. Same arguments apply to N+C, Ideopathic Parkinson's etc."

In response to this, quite simply put; we are, what we eat.

Today compared to say 15 to 20 years ago, mainstream food is very different as are meds; similarly... (edited that line)

Unfortunately, there are always conflicts and contradictions with or when profits relate, and/or are involved.

Not saying such to bicker, just stating the obvious.

Am not disagreeing with what you state, either.

But, I don't like to think that things can not be overcome and/or at least improved, naturally more so than not.

To not admit that there are times and circumstances which do require, further means and/or procedures; would be a fault on my part, so...

I'd not be here, if it weren't for such; amazing abilities within or of the medical industry.

There are vast cases of peoples' Diabetes disappearing or simply changing, for the better, from diet alone and/or perhaps along with lifestyle changes. (Dr. Lester Morrison, would agree).

As an odd metaphor; wireless electricity existed in a form, over 100 years ago, yet before long it may appear (or be presented) as though it were just invented.

By no means am I saying to, or not to, do anything; nor that certain things do, or do not work.

Each one of us are human, but no two of us are exact, and each of us are vastly different internally as well as externally (period).

Quote - DeathRabbit

"Well, all narcolepsy treatments are aimed at the symptoms, not the cause, due to the fact that hypocretin cannot pass the blood brain barrier. I do find 5-HTP helps me sleep. However, I'm beginnign to question whether it is worth it or not because I am having severe hypnopompic hallucinations on it."

I'm one week in with it, along with another set of supplements which all relate to the Kidneys/Liver and Heart, blood; I'm seeing a very excellent D.O..

I've had some changes in, or just unusual, dreams and sleep, yet it seems for the better perhaps; thankfully HH's for me typically are not so bad (probably asking for one though, having said that..).

So far, I've found things very relieving and beneficial, my Cataplexy seems different; that is along with vast diet changes, gluten/dairy free, over the past month and a week, also including a few 'blood letting cupping' sessions (to revitalize my blood and to remove toxins, as well as to penetrate certain deep matters relating to, again, circulation and blood as well as possibly past injuries and/or developmental structural matters).

Again, I've experienced already some very odd, yet surprisingly vast and perhaps more beneficial than not, changes. ?

Although I have doubt that anything will actually resolve all of my matters, as in my mind my N w/ C relates to other deeper (I'll put it as Endocrine) matters.

The body is a system and it can do some amazing things, on its own; there are cases of Narcoleptics with no, or minimal, hypocretin yet they don't experience Cataplexy and/or even EDS, like would be expected in comparison to 'the normal' (that was said by the main N doc, supposedly on the planet).

Again we are all different...

All I really do know is that I must attempt to monitor, observe and gauge what changes and how, within me; as well as along with others doing so, externally and over time.

The positive effects must outweigh the negative effects; the overall balance is crucial and not, at all, easy to grasp.

Nature is vast and miraculous; normal, is quite in-existent (seriously, except within perhaps arbitrary bubbles).

Time Tells!

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Quote - Garch2010

"I'm all for minimising use of powerful psychotropic / neurotrophic medication. However, remember N + C is due to a permanent loss of specific neurons in the brain, in other words an irreversible neurological degenerative pathology - just like Parkinson's and Alzheimer's. Vitamins etc might be a reasonable adjunct, but that's probably the extent of benefit.

N+C is not a psychiatric diagnosis where behavioural talk therapies have shown overwhelming efficacy, other than as an adjunct, specifically readjustment behavioural therapy.

If someone was a Type1 Insulin Dependant Diabetic, would one recommend a patient minimise use of injectable insulin and try some vitamins. Same arguments apply to N+C, Ideopathic Parkinson's etc."

In response to this, quite simply put; we are, what we eat.

Today compared to say 15 to 20 years ago, mainstream food is very different as are meds; similarly... (edited that line)

Unfortunately, there are always conflicts and contradictions with or when profits relate, and/or are involved.

Not saying such to bicker, just stating the obvious.

Am not disagreeing with what you state, either.

But, I don't like to think that things can not be overcome and/or at least improved, naturally more so than not.

To not admit that there are times and circumstances which do require, further means and/or procedures; would be a fault on my part, so...

I'd not be here, if it weren't for such; amazing abilities within or of the medical industry.

There are vast cases of peoples' Diabetes disappearing or simply changing, for the better, from diet alone and/or perhaps along with lifestyle changes. (Dr. Lester Morrison, would agree).

As an odd metaphor; wireless electricity existed in a form, over 100 years ago, yet before long it may appear (or be presented) as though it were just invented.

By no means am I saying to, or not to, do anything; nor that certain things do, or do not work.

Each one of us are human, but no two of us are exact, and each of us are vastly different internally as well as externally (period).

Quote - DeathRabbit

"Well, all narcolepsy treatments are aimed at the symptoms, not the cause, due to the fact that hypocretin cannot pass the blood brain barrier. I do find 5-HTP helps me sleep. However, I'm beginnign to question whether it is worth it or not because I am having severe hypnopompic hallucinations on it."

I'm one week in with it, along with another set of supplements which all relate to the Kidneys/Liver and Heart, blood; I'm seeing a very excellent D.O..

I've had some changes in, or just unusual, dreams and sleep, yet it seems for the better perhaps; thankfully HH's for me typically are not so bad (probably asking for one though, having said that..).

So far, I've found things very relieving and beneficial, my Cataplexy seems different; that is along with vast diet changes, gluten/dairy free, over the past month and a week, also including a few 'blood letting cupping' sessions (to revitalize my blood and to remove toxins, as well as to penetrate certain deep matters relating to, again, circulation and blood as well as possibly past injuries and/or developmental structural matters).

Again, I've experienced already some very odd, yet surprisingly vast and perhaps more beneficial than not, changes. ?

Although I have doubt that anything will actually resolve all of my matters, as in my mind my N w/ C relates to other deeper (I'll put it as Endocrine) matters.

The body is a system and it can do some amazing things, on its own; there are cases of Narcoleptics with no, or minimal, hypocretin yet they don't experience Cataplexy and/or even EDS, like would be expected in comparison to 'the normal' (that was said by the main N doc, supposedly on the planet).

Again we are all different...

All I really do know is that I must attempt to monitor, observe and gauge what changes and how, within me; as well as along with others doing so, externally and over time.

The positive effects must outweigh the negative effects; the overall balance is crucial and not, at all, easy to grasp.

Nature is vast and miraculous; normal, is quite in-existent (seriously, except within perhaps arbitrary bubbles).

Time Tells!

I'm one such beast. I don't have any cataplexy at all. I attribute that to a mixture of dumb luck and a rigorous work out routine. All my issues pertain to cognition/malaise. At the same time, I'm skeptical that healthy living can cure my narcolepsy. I'm sure it helps mitigate it; toward that end, I eat fewer fats and sugars, take vitamin/protein supplements, workout, etc. But I can't devote my life to living like a monk anyway, because it's simply too busy and I don't have an ability to focus well currently. So even if it would cure to live a perfect ascetic/Spartan existence, it's not an option for me.

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5-HTP is actually helping me feel a whole lot freaking better. The HH are getting worse, but I'm feeling better by the day, so it's worth it to get my soul eaten by satan once or twice a night to feel better in the day time.

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5-HTP AND CARCINOID SYNDROME

In a 2005 issue of "Circulation," Bjorn Gustafsson, M.D., and coauthors reported on research designed to determine if rats given 5-HTP would develop changes like those seen in carcinoid syndrome. Ten rats that received injections of serotonin once a day for three months developed a deficiency of platelets, as well as diarrhea and flushing. In addition, six rats developed heart disease. Four developed damage in one of the valves of the heart, while two developed disease in both valves. Examining the heart valves under a microscope showed areas similar to those seen with carcinoid syndrome.

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5-HTP & HEART DISEASE

May 22, 2011 | By Ruth Coleman

5-HTP is a chemical substance used by the nerves and platelets. As such, it performs vital functions. One type of tumor, however, can release high amounts of 5-HTP into the bloodstream. If blood levels of 5-HTP are too high, people can develop symptoms as well as damage to a valve within the heart.

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5-HTP & HEART DISEASE

May 22, 2011 | By Ruth Coleman

5-HTP is a chemical substance used by the nerves and platelets. As such, it performs vital functions. One type of tumor, however, can release high amounts of 5-HTP into the bloodstream. If blood levels of 5-HTP are too high, people can develop symptoms as well as damage to a valve within the heart.

Bah, everything causes cancer :P. Good to know though. I'm pretty convinced that anything can kill you if you over do it. Hell, drinking to much water has given rise to kidney cancer before.

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Bah, everything causes cancer :P. Good to know though. I'm pretty convinced that anything can kill you if you over do it. Hell, drinking to much water has given rise to kidney cancer before.

Hi. I don't think the articles are saying that 5HTP would give you cancer. I think the risk is that high serum levels of 5HTP may cause damage to the heart valves and to the vascular system.

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Hi. I don't think the articles are saying that 5HTP would give you cancer. I think the risk is that high serum levels of 5HTP may cause damage to the heart valves and to the vascular system.

The point being that "natural" supplements does not always equal safe or without risk. For example, Vitamin A in the right amounts is essential for health. Too much can be fatal. Statistically, those who consume the most vitamin supplements live shorter lives than those that don't. Now this is just a correlation which does not imply a cause and effect. Could just mean that people taking supplements are already ill anyway and as a result would expect a statistically shorter life span due to their illness ie the supplements were not the cause.

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Don't forget the effect of any drug/s, food/s, activity, attitude/s, culture/s, etc...

Be it natural and/or synthetic; one must not overuse/abuse whichever 'thing' and one must pay attention to the effect/s which occur onto/within them, being ready and willing to adjust/stop/replace however will benefit them best if desired and/or available.

Find and seek, Balance.

The internet information is vast, there is actual knowledge, as there also is a lot of broken knowledge.

Notice we are living in a near Star Trek-like world (not yet can we teleport through an iPhone but images/words and much much more basically do so, constantly/continually) already, yet in ways we are still living half in the pre-Renaissance-like world (much of the world still cooks using fire from wood, in basically a fire-pit).

All that I do know is, enjoy it as much as you can, one should 'Observe and Contemplate' to do so; it is quite fascinating to stop the 'rat-racing' and to do so, if/when you can!

It all comes down to a 'Proper Balance of any System.' Nothing more.

Good luck (edited, as it felt appropriate)

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