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Natural Remedies & Nature's Reasons For N


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#1 sleepingmonkey

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Posted 12 June 2013 - 11:09 AM

Hi, all!

 

I was wondering if anyone had an experience with trying natural remedies to stay awake, versus the typical medications that are prescribed to people with N & C. I do not take any medications (save the occasional cold medication or Advil), and I really hate to introduce something else when I don't know what it will do to me long term. I strongly believe that the body shouldn't require medications on a regular basis and that there are always alternatives such as consuming certain foods, acupuncture, aromatherapy, herbal supplements etc. Does anyone have any experience with anything?

 

I have begun my research (with the help of my bf), and so far this is what I have come up with, though I haven't tried anything as of yet since I just got the diagnosis.

 

http://www.natural-h...for-narcolepsy/

 

http://www.aboutnarc...arcolepsy-diet/

 

http://www.livestron...age-narcolepsy/

 

The first link is loaded with specifics - has anyone tried any of those things?

 

My friend's mother is Japanese and swears by essential oils. She has had success with them with cancer patients. And overall, the woman is just a wealth of knowledge. She has given me very specific breathing exercises to do as I'm falling asleep in the evening and is pushing the need to eat fermented foods and drink water properly.

 

That all being said (and I'd like to preface what I'm about to say with: this may sound a little out there!)...what are your thoughts on these genes and N not being a bad thing? I mean, these genes exist for a reason, right? So, why? I know that when I gave birth to my son six years ago, my N was actually the VERY PERFECT thing for taking care of an infant/baby. I woke when he woke with enough energy to get me through a couple of hours. I fell asleep as soon as he fell asleep. Repeat, repeat, repeat. I know this doesn't translate to men (or maybe it does?), but I wonder, is this nature's way of saying, "MAKE BABIES!?" I think often our society is so quick to "diagnose" things, label things as a "disease" or "disorder" and then slap a bandaid on it. But again, these genes exist for a reason.

 

Lastly...I think the dreaming aspect of N is sort of a gift. I never knew that I had it, and I always just assumed that my level of tiredness was in-line with other peoples' level of tiredness, and that perhaps I just succumbed to it more than others. That maybe I spoiled and pampered myself a little too much. I always thought that my dreaming was unusual, to say the least. I often dream as I'm falling asleep...lucid dreaming; though I cannot pinpoint whether or not I am actually sleeping, or actually awake. 

 

N limits me in several ways, but it also frees me in A LOT of other ways. C, not so much...I'm still trying to figure that one out.



#2 2Tired4This

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Posted 12 June 2013 - 11:30 AM

Mmm... i'm not trying to be rude and i'm not saying that some natural remedies can't help, but homeopathy is somewhat of a joke. I would advise you to eat properly and take your vitamins, but any more than that and you are pushing things. It's important that you get your blood tested for deficiencies and allergies and then adjust your diet from there. 

 

When we seek to explain behavior in Humans we often look for natural reasons. Often we find some kind of evolutionary or psychological cause that leads to a behavior. Scientists believe that N happens because of a lack of hypocretin caused by an autoimmune disorder. It's quite correct to call this ailment a disease or disorder because our bodies do not function in the same way that the healthy human does, and there is no strong correlation between family members. In other words, this disease doesn't exist because it was passed down through genes, it's a result of an environmental or chance influence. In order for the primitive human to be successful he or she would have had to be alert and conscious the whole day in order to hunt and protect it's self. Any human with severe fatigue would probably have been far less likely to survive in the pre-agricultural era and even in the pre-industrial revolution era. 

 

Sometimes I feel like N is a gift too, but most of the time I hate it. Most of us who have N have strong emotional ties with our dreams, so I can see why it would be easy to feel like they have some kind of supernatural quality. What's great about dreaming is that we know a lot more about it now then we did 50 years ago. We know that dreams are the mind's simulation devices. They help reinforce images, sounds, and situations from the day before and commit those to long term memory. Often, people who are deeply focused on a single subject before bed or throughout the whole day will experience dreams that deal with that subject. When I am deep in the depths of a programming problem that deals with math I often dream in colored equations and balance them out as the numbers float around. 

 

Narcolepsy is very eye-opening for even the most open-minded individuals. For most people it reinforces the idea of prioritization of tasks and time. Most of us try and shed the activities that we think are the least useful and focus on the ones that we value most. These are things like family, friends, and fulfilling hobbies. It's not always easy. It's not always enjoyable either, but we make the best with what we got because at least we have something. 



#3 Hank

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Posted 12 June 2013 - 01:46 PM

Guarana and Ephedrine are both stimulants.

Pseudoephedrine, a commonly used and abused nasal decongestant and stimulant, is derived from Ephedrine. Ephedrine has more unwanted CNS effects than Pseudoephedrine, but both rev you up.

Guarana is a stimulant, similar to caffeine and is found in some energy drinks.

Both are unrefined and will cause more jitters and nervousness than prescription stimulants. There is also inconsistency in strenth, potency and delivery. Just because they are "natural" does not mean they are not medications. Digitalis, a heart medication, comes from Fox Glove, which you can grow in your garden.

GHB- the active ingredient in Xyrem, is naturally occurring in the human body and some plants. Many medications are derived from plants.

However you choose to manage your symptoms, I hope you find success. I have found some success in "complimernary medicine". Anything, however, that claims to be a cure for Narcolepsy is a red flag to me- it is not currently curable.

I think that is a lovely that your N sleep cycle was an asset when your child was a baby. As a father, my interrupted nights' sleep with our three children was priceless, but almost cost me my life on several occasions- like the morning I fell asleep at a stop light and rolled into an intersection. I agree with you that it is good for my mind to think of the positives from N. However, I hope my children and theirs are spared from sharing in my genetic gift. I would love to remain the only one.

#4 sleepingmonkey

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Posted 12 June 2013 - 02:38 PM

Like Hank, I agree, there is no sure-fire anything with this (or anything else). But certainly, I would like to explore more natural options, as opposed to pumping my body full of medications that I'm unfamiliar with. At the very least, I try some things that could be potential helpful tools before trying any type of medication. And besides, I've gone, what, 15 years like this, and I'm still functioning! Granted, it's not an ideal by any means, but it's doable, as I've been 'doing' it.

 

2tired4this - I respectfully disagree with basically all of the above. Natural or alternative remedies are not a joke - that's a very bold, broad and all-encompassing statement. People have been using eastern "medicine" for far, far many more years with success. These people live longer, healthier lives than Americans. Ingesting the right foods (that are prepared in the right ways, for optimal absorption of nutrients) have cured all kinds of diseases, regularly. I know people that have personally been spared as a result of raw foods diets after a cancer diagnosis, and without the help of western medicine. You simply cannot deny thousands of years of history. Everything we need is of this earth. Sometimes it's just finding the right thing to consume, the right way to live, the proper combinations...but it's out there, and it's just a matter of us using the tools available to us to explore, experiment and nail down. Nothing is perfect...and even these medications that they are prescribing all of you (and want to prescribe to me), aren't sure-fire things; they are man-made medications used to quell symptoms, and they don't work for everyone, and they certainly don't work in the same way from one person to the next.

 

Our society pushes pharmaceuticals. That's what our doctor's do. I don't really have the time to argue the pharmaceutical industry and the very few major corporations that run our entire country. But, suffice it to say, there is another agenda, and you better believe it boils down to money, and not that these medications are the end-all-be-all, and even the 'right' thing for the diseases or disorders people have.

 

Anyway, this is just how I feel. Certainly you're entitled to your opinion and to manage your "disease" in any way that you see fit :)

 

I would argue that someone with N would be able to rather easily survive the pre-agricultural era because those were times when people (the 'healthy' humans with no presence of N or "disease") could not afford to sleep an entire 8 hours. Guess what, you sleep 8 hours, and some kind of predator will eat you, or another human competitor will kill you in search of resources. So, one could only afford to sleep sporadically when the time allowed, and you were supposed to get fairly good REM sleep out of it, hence N would happen to be an excellent physiological trait to have. Also, early humans put a lot of stock and significance into their dreams. So, in my head, this all somehow connects to primordal humans. 



#5 DeathRabbit

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Posted 12 June 2013 - 03:12 PM

As far as whether or not it's a disease, there's no question in my mind that it is. But then agian, I went from barely having to try to wow people in my field to having to put forth a leviathan effort to just do a less than mediocre job, all along the way dealing with debilitating fatigue, headaches, and brain fog that makes me feel like a moron so much that I hate myself most of the time. If it were just as simple as me being sleepy and having to take a few naps now and then, I wouldn't feel so strongly about that. In fact, that's how it started out. There was subtle cognitive impariment, mainly in short term memory, but overall, I was just sleepy a lot and that was no big deal. One of things that sucked the most as I got worse was watching peers that I was smarter than outstrip me in performance. I know this one guy; he's not particularly, smart nor gifted. Yet, he's an amazing engineer and hardware/software developer. The main reason: his energy level. He can function perfectly on 5 hours of sleep a night with no deletrious side effects and can pull 16 hour gays 6 days a week with no issues. I'm not asking for that even. I'd just like to be able to sleep 9 hrs a day and work 8 hrs a day 5 days a week without beign significantly impaired. But I can't even do that, so it's absolutely killed my hopes for career advancement or becoming a musician in my spare time. So yes, in my mind, it's a seriously debilitating condition and I definitely want FMLA to be there if I need it.

 

EDIT: Look, I don't mean to come across as harsh, bt it's a touchy subject. I am not exaggerating when I say that Narcolepsy is slowly ruining my life. And I get so many people that just brush it off as me being naturally a sleepyhead or being depressed or not eating right or needing to be gluten-free, etc, etc. I almost wish I could inflict what I feel upon those naysayers for a week. I remember one time, I must have actually managed to communicate the magnitude of how much N sucks for me, because the person just looked at me and was like "How do you even manage to live? I couldn't do it. I'd just quit."



#6 Hank

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Posted 12 June 2013 - 03:35 PM

If I were being chased by a predator, I would make a quick and easy snack as I collapsed for his dining pleasure. Those cavemen (cavepersons) with Cataplexy would have been easy pickin's.

That must be why Narcolepsy and Cataplexy are rare. Many of us must have been devoured before we had the chance to reproduce.

#7 DeathRabbit

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Posted 12 June 2013 - 03:43 PM

I think (and Dr. Mignot has said some things along these lines to confirm this) that there is such a thing as mental cataplexy. Where instead of bodily collapse, you just go into a stupor. That's me. I'd prolly just get confused and run into a tree.

 

EDIT: I do get what she's saying though. Absent the confines of modernity, we could have schedules of our own accord to a greater degree. I'm pretty sure I would have made an excellent night watch on the ol' city wall. Up from 7 toto 5 maybe, then nap sporadically through the day. I could get down with that. Night is always better because I dont think it reminds me of how sleepy I am.



#8 sleepingmonkey

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Posted 12 June 2013 - 03:48 PM

Hahaa well, right, I suppose. But I don't collapse as a result of fear...just laughter. So unless a predator was attacking me with funnies, I'd probably be a-OK ;)

 

No offense taken! I really hope that this does not progress for me, beyond where it has been hovering for the past 15 years. But I must say, in the last handful of years, it has gotten worse. I'm not saying it's no big thang, or I wouldn't much rather it be different. Certainly I'm sick of sleeping my life away while my son wants to play with his mommy; I don't want him to grow up thinking 'mommy slept all the time and never played with me.' Not to mention, I'm missing out on A LOT of things with him, my family, friends and quality time with my bf. I'm just an optimist. I try to see things in a pure, positive form when I can. I believe that there are alternatives to medications for everything. I don't know that I will subscribe to 'cures' for all things, but certainly improvements (and it doesn't sound like these medications are creating perfection in dealing with N & C either).

 

Anyway, was just looking to see if anyone had an experience with anything besides the traditional medications that are being given to N & C patients. If anyone is out there, please feel free to send me a private message or post here. Thanks!



#9 DeathRabbit

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Posted 12 June 2013 - 03:55 PM

Well, on that note, 5-htp and valerian root (valeric acid) have helped improve my sleep architecture. Also, a small nightcap (for me, 1 shot of jack, for you, maybe a half shot) can help on those insomniac nights. The 5-htp and valerian root seem to really have diminishing returns though. I go on them and they work for about a month, then they quit. I go off them for a while, go back on, and man, it's awesome sleep all over again. As I said in another thread, a common complaint of narcoleptics is poor circulation and headaches, so I am experimenting with ginkgo biloba and Niacin(b3). My thing is chemicals are chemicals, whetehr they be natural or synthetic. Maybe you run extra risk with syntehtic compounds have unintended side effects with organic beings, but you also run the risk of no oversight/quality control guidelines with herbal ingredients. So, be a discernign customer no matter what you do, yet don't eschew wisdom, no matter the source.



#10 vidar

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Posted 12 June 2013 - 11:33 PM

I personally take the follow:

 

Isotonix Multivitamin with Vitamin D (1000 IU) Every other day in the Summer, every day in the winter when my symptoms are much worse.

Vitamin D Tablet: 2000 IU Daily if I can remember...

Isotonix Vitamin B complex every other day (mostly because of migraines, which it decreases.  This is supported by studies done in Europe, as an aside).

1 Fish oil tablet: Cardio-protection (I also take it because I take 2.5mg Bystolic, a Beta blocker, which drops by HDL and the fish oil brings the HDL levels back up to pre- Bystolic levels).

I take the supplements in the night before bed because they can interfere with stimulents working correctly (particularly amphetamines)

I avoid heavy lunches.

Caffeine in moderation... moderation being relative.

Avoid Alcohol (duh, messes with sleep architecture) 

 

I tried a number of supplements before being actually diagnosed including now banned secondary analogs of GHB/Xyrem, not really any of them worked well though the banned ones worked well.  Vitamin D is the only thing I've found helps noticeably. 

 

 

Like Hank, I agree, there is no sure-fire anything with this (or anything else). But certainly, I would like to explore more natural options, as opposed to pumping my body full of medications that I'm unfamiliar with. At the very least, I try some things that could be potential helpful tools before trying any type of medication. And besides, I've gone, what, 15 years like this, and I'm still functioning! Granted, it's not an ideal by any means, but it's doable, as I've been 'doing' it.

 

2tired4this - I respectfully disagree with basically all of the above. Natural or alternative remedies are not a joke - that's a very bold, broad and all-encompassing statement. People have been using eastern "medicine" for far, far many more years with success. These people live longer, healthier lives than Americans. Ingesting the right foods (that are prepared in the right ways, for optimal absorption of nutrients) have cured all kinds of diseases, regularly. I know people that have personally been spared as a result of raw foods diets after a cancer diagnosis, and without the help of western medicine. You simply cannot deny thousands of years of history. Everything we need is of this earth. Sometimes it's just finding the right thing to consume, the right way to live, the proper combinations...but it's out there, and it's just a matter of us using the tools available to us to explore, experiment and nail down. Nothing is perfect...and even these medications that they are prescribing all of you (and want to prescribe to me), aren't sure-fire things; they are man-made medications used to quell symptoms, and they don't work for everyone, and they certainly don't work in the same way from one person to the next.

 

Our society pushes pharmaceuticals. That's what our doctor's do. I don't really have the time to argue the pharmaceutical industry and the very few major corporations that run our entire country. But, suffice it to say, there is another agenda, and you better believe it boils down to money, and not that these medications are the end-all-be-all, and even the 'right' thing for the diseases or disorders people have.

 

Anyway, this is just how I feel. Certainly you're entitled to your opinion and to manage your "disease" in any way that you see fit :)

 

I would argue that someone with N would be able to rather easily survive the pre-agricultural era because those were times when people (the 'healthy' humans with no presence of N or "disease") could not afford to sleep an entire 8 hours. Guess what, you sleep 8 hours, and some kind of predator will eat you, or another human competitor will kill you in search of resources. So, one could only afford to sleep sporadically when the time allowed, and you were supposed to get fairly good REM sleep out of it, hence N would happen to be an excellent physiological trait to have. Also, early humans put a lot of stock and significance into their dreams. So, in my head, this all somehow connects to primordal humans. 

 

Last paragraph:  So, how we sleep now is not how we slept for a number of years.  In fact, the few medical texts from the medieval ages that discuss sleep are surprisingly consistent in what they say about how people slept.   They would sleep in about two blocks, called first and second sleep.  They would go to sleep at dark and wake between midnight and 2AM before going back to sleep a second time. During this in between block, depending on social class the activity often differed.  Intellectuals would often work by candle light, others would pray, others would drink and have a meal.  Many would have sex (some interesting passages on how the "rougher trades" would prefer this period of time to have sex.  An interesting article was written on this in the wallstreet journal several months ago. This appeared to be predominate way we slept until electricity came and changed everything.  

 

Remember medicine was incredibly primitive even after the turn of the 20the century and sleep wasn't high on the priority list when people would die from simple ear infections...



#11 Ferret

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Posted 13 June 2013 - 01:43 PM

There has been a lot more that has been discovered about Narcolepsy since I was diagnosed in '86. After my disaster with the Ritalin/Tofranil regime, I was determined to find a better way to feel reasonably normal. There was no internet and I resorted to reading medical textbooks. The only info I could find was that two chemicals, serotonin and norepinephrine, were supposedly responsible for the restful stage of sleep. I could find no precursor for norepinephrine. But, the precursor for serotonin is the amino acid tryptophan. Trytophan was converted using Vitamin B6 and caffeine interfered with the whole process. I started experimenting on myself...taking trytophan pills and B6 and no caffeine. I felt better...not good but better. I substituted foods that had tryptophan instead of the pills and took a slide backwards into the fog. Used the trytophan pills again and improved. I wondered, at that time, if I was missing the enzyme that was able to break tryptophan out of the foods that contained it. And then the experiment was brought to an abrupt end when all tryptophan supplements were banned.
Back to the hellhole. Until, a Christmas party in '90, where everyone was still smoking except me. I lit up and the fog cleared for the first time in over five years. My synapses were snappin' again. I KNOW it's bad for me and the person next to me. But, what the hell, we're talking quality of life here and I'm here for a good time not a long time. So now, everyone else has quit smoking and I'm the only one left. I have tried the patch but the delivery system is not the same. Coffee and diet coke are my friends.
Now on day 4 of the Modafinil...after another two weeks, I will go without caffeine, then, two weeks later, I will go without smoking. It's a process and I only change one thing at a time and evaluate before making another change.
What works for one person doesn't work for another. Please don't anyone give up.

#12 sleepingmonkey

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Posted 13 June 2013 - 11:12 PM

I have a lot to say, but I'm sleepy!!!

That being said, I would like to quickly say one thing. When women are pregnant they often crave and consume foods that include nutrients that their body is lacking. I think we all do this, if we allow ourselves to be aware of it, whether or not we are pregnant. Reading some of the above I realized that I have been unconsciously doing the same. I consume large amounts of vitamin B in a not so pure form (red bull), not out of the need to stay awake, but because it's literally something I feel like I have to have. Same is true with milk. Daily I drink several pints of milk in one swift gulp because my body is demanding it.

I think I'm going to experiment with eliminating one and see how my N reacts to that.

In other news, I was prescribed Nuvigil today. The doctor thinks it will be far too low of a dose for me. He said that he hasn't seen a case like mine in 20 years. I don't know if that means that maybe he just doesn't see a lot of N & C patients, or that my case is severe. He did say that on a scale of 1-10 he would put me at about a 7.5-8. Which makes me wonder...how have I simply existed like this, in this state, for so long?

#13 exanimo

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Posted 14 June 2013 - 06:17 AM

Well I can appreciate your optimism, it is important to find balance. This means taking in to account the good and the bad, the healthy and the unhealthy. The facts and the myths/untruths. Being logical and yet being open minded to less logical thinking.

 

So with that said, I'm not sure that there is a 'reason' for N being what it is, besides the fact that we are prone to genetic mutations. Some of these mutations are due to what we know as 'survival of the fittest' meaning that mutations which aide in survival will then be passed down to offspring more so than someone without that specific mutation. When you think about the many illnesses and disorders out there, a large portion of them have something in common: some sort of symptom which interferes with procreation. Whether it be impotence, low testosterone, imbalanced hormones, lack of energy (therefore less time or energy for sex) or low sex drive. This means that those who are sick, will be less likely to procreate. Meaning that those who are healthy, will procreate and the majority of offspring are then healthy (and not sick). 

 

Narcolepsy is thought to be an auto immune disease, one that is both impacted by genetic and environmental circumstances. This is known because the number of PWNs with family members with N, is not enough to support that there is a singular genetic trait which means N will develop. Also, in cases of identical twins, there were some who both had N, while others with only one twin developing it. Suggesting an environmental factor (trigger) had to be apart of the equation. 

 

I am not saying that N is horrible, or that it is in no way positive - I do like to believe that there are some things that N has given me (a better understanding of 'invisible illness' and a clearer connection to what it means to raise awareness for a cause). But I do not think there is some greater purpose for N. Or any other disease, for that matter. Rather it's a simple anomaly, mutation or genetic malfunction that has come in to play for those individuals. If anything, I believe there may be a spiritual reason.

 

You mention your son and how it was perfect for caring for an infant. I am not a mother, but I disagree with this concept. The reason you were able to be so in tune with your son during infancy, was due to the similarities you both had at the time. Infants spend the majority of their time sleeping - most of which is REM sleep. This gradually declines until their reach adulthood - where the average adult spends about 25% of their sleep in REM. As PWNs most of us experience an abnormal amount of REM, as well as the rest of the sleep stages being disrupted and out of order. So you and your son, both experienced an increase in the amount of REM sleep. But, unlike you, your son will most likely not continue this pattern. Meaning while he gains energy and grows, you will continue to be tired due to your N. 

 

Now to answer your question about alternative medicine, there is one thing that has helped me lately. I'm not sure if it is a carbohydrate intolerance or a gluten sensitivity (there have been studies which linked N with gluten intolerance, as they are both on the same gene). But lately I have noticed that days where I avoid heavier meals like cereal, bread or lots of sugar, I find myself less tired. And because N is due to a lack of hypocretin, which is normally controlled by the hypothalamus, it is likely that the metabolism is affected in many people, since the hypothalamus and hypocretin both regulate metabolism (but they are not the only areas/chemicals which do so).

 

And I am not trying to be negative or nag you about any of this. I just want to give my opinion and the information that I have at hand (though this is getting hard as I still have yet to go to bed and my brain is foggy...I had to look up genetic mutation because I couldn't remember 'mutation' lol!). So one last thing: from what I've read, food cravings or aversions, during pregnancy or not, are not scientifically linked to a lack of certain nutrients. Rather a lack of a specific nutrient, such as iron, is followed by 'symptoms', specifically those associated with anemia such as tiredness. The same goes with gluten intolerance, these people do not find them self aversed to gluten by any means, but they get sick because they are eating it. 

 

I hope that the nuvigil helps you, I know it has me. One thing I will add, is that 'medication holidays' may be beneficial with nuvigil, and any other stimulant. When I first heard this, I was skeptical as the doctors always recommend that you take medical as prescribed (usually daily). However, in the case of using stimulants long term, as is the case with PWNs, it is easy for us to become desensitized to them and for the stimulant to become ineffective. I have found that when my nuvigil does not seem to be helping as well, that if I take a two or three day 'holiday' (where I do not take the medication) that it becomes effective again when I do. Though, it does cause a minor headache, like the one I had when I first began taking nuvigil. 

 

Good luck! :) And again, I am not trying to critical (though I am...and I blame it on the fact that I'm a virgo!!).  But really, this is just my tidbit on the subject. Take it for what you will :P 



#14 Ferret

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Posted 14 June 2013 - 08:19 AM

Good post Exanimo.
Cravings can be good for you OR bad for you. Only you and your body can determine which category they fall into.
Watch out for food additives in convenient prepared foods. I was shocked to learn that there is red dye in some clamato juice. Red dye is a stimulant in some people and can be responsible for hyperactive behaviour in children. Think multi coloured Flintstone vitamins are good for your kids? MSG (and its many ways of being labelled) causes me to have really bad sleeps.
Over the years, I've become a label reader and try to make everything from scratch using natural ingredients.
I'm just putting the info out there in case it hadn't occurred to you.

#15 DeathRabbit

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Posted 14 June 2013 - 09:55 AM

I have a lot to say, but I'm sleepy!!!

 

OOOooohhhhh! I hate those feels!!! It's like I have ideas but when I even start to try to think about putting them into words my mind turns into squishy pork chops floating through a river of chocolate crude oil mixed with molasses.



#16 DeathRabbit

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Posted 14 June 2013 - 10:14 AM

Good post Exanimo.
Cravings can be good for you OR bad for you. Only you and your body can determine which category they fall into.
Watch out for food additives in convenient prepared foods. I was shocked to learn that there is red dye in some clamato juice. Red dye is a stimulant in some people and can be responsible for hyperactive behaviour in children. Think multi coloured Flintstone vitamins are good for your kids? MSG (and its many ways of being labelled) causes me to have really bad sleeps.
Over the years, I've become a label reader and try to make everything from scratch using natural ingredients.
I'm just putting the info out there in case it hadn't occurred to you.

Completely unrelated note, any thing with blue dye (grape drink, some green drinks, and of course, blue drinks) turns my pee green. I can't metabolize it at all. Wonder if that's related to my Gilbert's syndrome.



#17 sleepingmonkey

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Posted 14 June 2013 - 12:19 PM

OK...a little more time (and alertness, kinda)!

Thank you all for the suggestions, and also letting me know what has worked and hasn't worked for you; if gives me a starting point. Ferret, I'm pretty sure you can purchase tryptophan online. I'm not sure if it's the same dosage (or exact form) you took, but it's worth looking into if it helped you. I just did a quick search and several sites popped up.

I'm trying to figure out an approach to all of this. I'm afraid that if I take the Nuvigil and it works, that I'll get lazy about it and not look into other alternatives because I'll be feeling better. So, I'm going to try eliminating/adding things to my diet it one at a time...I can see this is going to be a long, tedious process. I'm first very curious about the B & D vitamins...I'm going to eliminate those and see if anything happens. From there, I want to really delve into the various medications out there, why they work for some, why they don't work for others, what they actually DO that allows them to work for some people...and then, try to find a correlation to other things out there that possibly have the same effects (or a combination of things) and start slowly introducing them into my diet.

Exanimo - I enjoyed your post and take no offense to any of it. I'm certainly open to others ways of thinking; we learn best when we are open to exploring other ideas and ways of tackling things. Which I guess was my point from the beginning - that there are alternatives, and I want to explore them. Certainly they're not the mainstream way of doing things, but my gut tells me there is something out there that will work for me. Maybe not perfectly - maybe not a 'cure' - but a more alert, awake existence.

Despite N & C, my sex drive has not taken a toll. I manage to find more than a useful amount of energy for it. So, somehow I guess I have my priorities straight on how I meat out my energy :P But along those same lines...I also have endometriosis. It's recurring and causes a lot of pain. It could potentially cause infertility if surgeries aren't performed to remove excess tissues and avoid scaring. The one thing that naturally makes it go away? Pregnancy! It will, however, likely reoccur afterwards (and did for me). I am trying to allow myself to be open to the possibilities that there is a greater, organic meaning to why certain people are afflicted with certain things. I would like to believe there is a reason.

Regarding caring for my son as an infant - you're absolutely right, that's exactly why it worked. But, that's also exactly why it would work again, and again and again. I'm proposing that the N allows for easy care of an infant; and for me, it did. Though, you're also right that as he's gotten older my energy levels have stayed the same, and his have grown at an extreme rate. Now at 6, he regularly makes comments about me falling asleep on the couch. Also, I do find that I can be quite rotten upon waking when it wasn't my intent...so I feel like he gets the *BEEP*ty end of the stick with regards to my N. Balance between a couple is important. Ideally, two people should come together and have their own individual strengths and weaknesses; where I fail, hopefully my partner will succeed. Not everyone is a perfect parents to an infant, baby, toddler, tween, teen, adult - where I can connect, my partner may not be able to. He has a child and he was not much for involvement when his son was a baby. But as he grows and can communicate more, my partner is GREAT (and I think will be even more amazing the older he gets) because he's SO analytical, introspective - he's creating a thinker by his views of the world, how he picks things apart, how he answers questions/asks questions etc. He excels far more in these areas than I do; they're his things, and not mine...well they are, but not in a manner in which I can properly convey to a little person, in layman's terms. But give me a crying baby that can't be soothed, 2:00 a.m. wakes ups, poopy diapers etc. and my heart sings! Anyway, I kind of went off on a tangent there...but - in my fog - I'm trying to convey that we all have different abilities. And where N might be considered a weakness is a lot of areas of my life, it's just not true across the board for EVERY area of my life. Perhaps that's just the optimist in me!

I don't pay much attention to dyes in foods/drinks...but I'm going to start!! Thanks!

#18 Hank

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Posted 14 June 2013 - 03:32 PM

Did you say that you are going to elinimate vitamins B and D or add them, not sure. Many people with N and other autoimmune funkiness are low in vitamin D. I am outdoors a lot and light skinned and am continually low in vitamin D. If you plan to eliminate it, consider it carefully.

#19 sleepingmonkey

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Posted 14 June 2013 - 03:49 PM

Yeah, I'm going to eliminate it - temporarily - because I want to see what effects (if any) occur. Just want to have a full understanding of how things personally effect me.

 

I tried one pill of Nuvigil (against my better judgement - but hey, I need to be open to possibilities!), and I don't like the way it makes me feel. I feel anxious, and I'm still yawning my face off!



#20 Hank

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Posted 14 June 2013 - 04:08 PM

Eliminating vit D will take a long time to notice the effect. Low vit D causes sleep disruption and a range of other vague issues. Why would you possibly mess with vit D? Please let me know because I benefit from supplements of vit D.