Thursday, January 7, 2010

Alternative and “natural” treatments for Narcolepsy

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It’s not surprising that many Narcoleptics (myself included) are looking for ways to treat Narcolepsy that don’t require filling a prescription from a doctor.  After all, there isn’t really a (traditional) Narcolepsy medication that doesn’t have some sort of major drawback associated with it – and that’s not even touching on how much they cost (usually,it’s a lot). 

Xyrem and Provigil (the “good” Narcolepsy medications) both have lots of side effects associated with them.  With Xyrem you have to jump through all sorts of rings of fire just to get it, not to mention that it contains GHB (which makes it sound a bit scary).  Plus it’s expensive, especially if you don’t have really good health insurance.  Provigil interacts with hormonal birth control, and we honestly don’t know exactly why it helps people.  Then there’s the traditional stimulants, with their host of side effects, the problem of tolerance over time, and highs and lows.  And finally we have anti-depressants (used to treat cataplexy), which have their own side effects, not to mention that it’s not fun to take a mood altering drug for something unrelated to depression/mood.

Considering all of this, who wouldn’t be interested in finding something that is (in principle) safer, cheaper, more natural, and easier to get? 

And if you are not satisfied with how you feel taking your current medication, who wouldn’t be interested in other things you could take that are not “bad” or as “bad”?

Which brings us to today’s topic: alternative medicine for Narcolepsy.  I have seen many people ask about this on Talk About Sleep, so I thought it is something I should address.

People have many different reasons for asking about alternative medicine (or “natural” methods).  Some people are uncomfortable taking traditional medications or have given up or failed to find something that worked for them in traditional medicine.  Some people are looking for medicines that don’t cost as much.  Others cannot take traditional medications (for example, because they are pregnant), while some are just looking for something to add to the medicines they already take in the hopes that it will make them feel better.  Regardless, the question remains the same: What alternative treatments are out there for Narcolepsy and, more importantly, are they worth trying? 

With those words, we plunge into the confusing, murky, and unregulated waters of “alternative” medicine. 

Although I don’t know of any one thing that I would recommend in place of traditional medications, I will do my best to touch briefly on what I do know about what’s out there and whether you should bother- or rather risk - trying them. 

There are many alternative treatments out there.  The big question is: should you try them?

Before I give you an overview of what I know about alternative medicine, I wanted to say that I consider these options to be supplementary, not primary, treatments for Narcolepsy. 

In other words, I don’t know of any alternative treatments for Narcolepsy that I would recommend in place of the traditional medicines.  (I’m sorry, but it’s the sad truth.)  Nor would I recommend that you leave your sleep doctor in search of a “natural” doctor. 

Yes, none of the Narcolepsy medications are great sounding, but there is a reason why most people take them anyway: the simple truth is they work far better than anything else we have available. 

You may not like taking GHB (the main ingredient in Xyrem), but for some people it works.

It’s up to you, but I wouldn’t abandon traditional medicine when it comes to Narcolepsy unless there is some reason why you can’t take medicine (for example, if you are pregnant).  Personally, the only time I would ever consider stopping taking medication would be if I wanted to get pregnant or was pregnant (and then I wouldn’t be taking any non-traditional alternative pills or supplements either). 

Most of us are just trying to find something that works without hurting us period, not to mention something that is more natural/ non-traditional.  I may buy organic strawberries because I worry about ingesting chemicals, but I’m sticking with my Concerta. 

Having said that, here is my alternative medicine for Narcolepsy 101 (the concise version):

  1. Traditional Chinese Medicine (or, TCM): I went to a specialist in TCM, a form of alternative medicine, a few years ago, and she was somewhat helpful.  I went to her not only for help with my Narcolepsy, but also for migraines and weight loss.  She gave me a very restrictive diet plan (which was so extreme I didn’t follow it for long) and I had a bunch of acupuncture sessions with her.  I did think that the acupuncture helped my Narcolepsy a little bit but it was very expensive and painful.  I stopped seeing her after maybe 8 sessions; I just couldn’t bear the thought of the needles.  It made me very anxious – and I’m not afraid of needles.  Apparently I am more pain-sensitive than most people.  I know that TCM also can involve prescribing herbs and such but I didn’t do any of that.
  2. Naturopathy:  There are many kinds of “natural” (ie not an M.D.) doctors out there.  TCM is only one form of alternative medicine.  I did see a naturopath in eighth grade who did this cool test involving putting food on my stomach and having me raise my leg, and he gave me a bunch of diet regulations.  As I didn’t want to be there in the first place, I didn’t follow the diet he gave me, but I have heard a few people say that seeing a naturopath was helpful to them.  Someday I would like to have someone do that food test on me again (to see if I have any food sensitivities), although right now I’m not willing to spend the money on it because I’m not sure how helpful it would be.  I wish I had kept the recommendations from that doctor though.
  3. Homeopathy: I went to see someone once but it didn’t help me.  I know that some people believe in it, but I personally would suggest that you avoid it.  It is not proven to be helpful, and isn’t at all scientific.  Apparently homeopathic remedies are mainly water.  One article I read on it said that the average homeopathic remedy is so distilled that it is as if you put one drop of the substance that supposedly will help you in all the oceans of Earth.  If you are considering trying this, you should definitely read this article (written by the BBC).  I read this article while I was seeing a homeopath, not realizing that in scientific circles homeopathy is basically considered to be quack medicine.  After reading more about it, I stopped going.
  4. Dietary changes: Some Narcoleptics find that their Narcolepsy is better if they change their diet.  Some people have a food intolerance or sensitivity (for example, to gluten) and find their Narcolepsy is better when they avoid that food or food group.  I have heard other people talk about limiting carbs or going on a low GI diet.  I think don’t think there is anything that works for everyone, but this is one of the safer things one could try, as it doesn’t involve ingesting anything you wouldn’t normally ingest.
  5. Vitamins and supplements: I have heard many Narcoleptics talk about how vitamins and supplements help them on Talk About Sleep.  Recently people have been talking about vitamin D supplements, but there are others that I have heard people talk about (such as B vitamins).  I personally don’t take any supplements to help with Narcolepsy, although I may do so in the future.  Some people have had vitamin testing at the doctor to see if they have a deficiency in something.  If you decide to take something, please research possible side effects and interactions beforehand.  Just because it’s over the counter doesn’t mean it can’t hurt you.
  6. Acupressure: I have tried this in the past and I think that it helps some, although I haven’t been doing it lately.  I have a book on doing acupressure on oneself and I used the Chronic Fatigue Syndrome and better sleep points, as there was no Narcolepsy section.  If you are interested in acupressure, I would recommend this book

Wow, this is turning out to be a very long article (one of those, “you wouldn’t think it, but this took me hours to write articles,” lol). 

As a final note, please take alternative medicine as seriously as you do traditional medicine.  As I mentioned before with vitamins and supplements, remember that just because it’s “natural” or over the counter doesn’t mean that it’s safe or can’t hurt you.  You should always check to see if there are any interactions with your medications before trying something, and do your research.  Medicine is still medicine, regardless of how you label it, and even something like vitamins can cause harm.

Also, because alternative medicine isn’t regulated like traditional medicine, you have to be extra careful about both safety and not being ripped off.  Someone must click on those “all natural Narcolepsy cure!!!” ads on google, right?  Don’t be fooled by these quack remedies, the siren song of medicine.  But wait, you already knew this, right? :-)

Have you tried any of these alternative treatments?  If so, did you find that what you tried helped you?  Did I miss a treatment that you think is useful?  

35 comments:

  1. The line between "natural" remedies and "medical" remedies is very fine. Many pharmaceuticals are derived from plants, the difference being that pharmaceuticals have to be extensively tested before they can be sold. Consider that GHB (Xyrem is a brand of it) used to be sold in health food stores as a "natural" remedy. Now it's so heavily regulated that most people who actually would benefit from it can't get it prescribed or can't afford it.

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  2. The gluten free diet is still helping me tremendously (though not, as you mention, would I say 100%...) How do I know? I gave in and ate oreo chessecake from The Cheesecake Factory two consecutive days over Christmas vacation. It elevated my daytime sleepiness significantly for about a week. (Though, interestingly enough, not my other symptoms.)

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  3. Not a very informative article. Just 8 sessions of acupuncture and one for homeopathy and you've given up on it completely. Hardly conclusive especially since a negative article put you off homeopathy.

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    1. Anonymous, I agree with you about documentation regarding acupuncture and homeopathy. Homeopathy has been around for many years and it has been proven to be safe and effective, when properly utilized. The author of this article tends to display numerous inconsistencies in her own ventures of seeking alternative treatment. But, yet blows off various treatments based on her anxiety or lack of consistency with the intended treatment. Granted, if you follow a practioners advise for a substantial amount of time and you are seeing no results then common sense would indicate time to move on and try something different, but that doesn't mean the treatment may not work for someone else.

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    2. No homeopathy is complete bs. The reason why is math. The ratios on the bottles often are impossible ratios meaning that the substance is entirely salt water usually. In fact most of the ratios are so ridiculous that there aren't enough molecules in the universe to fulfill the ratio. But the placebo effect is powerful so if you believe in it it might as well be something of note. O_o sorry.

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  4. Interesting post! I am currently going the No gluten route, and it is making a difference, especially in my mood. I have only been doing it for about 3 months so I am sure that it will take more time, and dicipline to see more differences. Heidi L. at the zombieinstitute(dot) com really has a lot of info regarding gluten. She has been really helpful to me too.

    I am excited to check out some more about some of the other type of treatments you have mentioned. Hope all is well with you, and thanks for this informative post!

    Go easy,
    Ja

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  5. In response to the third post: As I explained in my article (which only touched on each thing briefly because of how many things I have to deal with), I actually thought that acupuncture helped me a bit - I did not stop it because I didn't think that it helped but rather because of the pain and the anxiety about the pain, in addition to the cost (which was quite high). It was also time consuming having the procedure and traveling to and from there, plus I had to go multiple times a week. (You are supposed to relax while the needles go in, but after so many sessions I just couldn't because I knew that it was going to hurt so much). This is just my experience personally - I know that people say that acupuncture isn't supposed to hurt, but I happen to be unusually pain sensitive and even though I am lucky enough to have insurance that will eventually reimburse me for the treatments, I was having to pay 100 euros per treatment out of my own pocket, twice a week, which is quite a lot.
    For me, acupressure was a good alternative to acupuncture - I've found that it helps some, I can do it myself whenever I need to, it's free, and it doesn't hurt. Although acupressure is less known, it's actually been around for thousands of years while acupuncture has only been around for hundreds, but they use the same points. I'm not against acupuncture- it might help some people - but I personally think that acupressure is a good alternative and that if you'd never done either before, I would probably try acupressure first for the reasons I mentioned before. If it helps, you could always then see a professional in either acupressure or acupuncture.
    As for homopathy, I will cover my experience more in depth in a future post, but I actually did see the homopath at least 5 times before I decided to stop. I mentioned the article in the BBC because I personally hadn't realized what homopathy really was (i guess I had forgotten)- I didn't realize that conventional science doesn't think much of it. here in Germany it is very popular and my regular doctor had recommended it for an unrelated problem I had so I was surprised when I found out that conventional medicine doesn't think much of it. I know that some people in general (not Narcoleptics but just people) think that homopathy is helpful and useful, but after researching more about it and yes, reading that article in the BBC, I wasn't willing to keep paying a lot of money for treatments (my insurance didn't cover it at all) when I hadn't noticed any benefit from it and when I probably would never have gone had I realized what it was (silly me, I don't know how I forgot! lol). As always, I can only write about what I have heard from other people, what I read or hear about, and what I have myself experienced, but mainly I write from my own experience because that is what I know the most about, so you are welcome to disagree. I might add that if I have learned one thing about Narcolepsy it's that generally speaking what works for one Narcoleptic doesn't work for all Narcoleptics (which is why I think many of us are here - we want to learn about what other people do in the hopes of finding out what works for us personally).
    Have you personally tried acupuncture and homeopathy for Narcolepsy? Did you find one or both to be helpful? I would be interested to hear more about it.
    Take care and a merry Tuesday to you,
    Ellie

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  6. I have been actively searching to no avail for PWN who have personally tried acupuncture/acupressure so I'm really interested in any responses to your comment.

    Specifically, I want to know if it's has been worthwhile considering the trade off of high cost/discomfort/inconvenience with amount, if any, relief of EDS.

    Regarding acupressure, Elle, what are the acupressure points related to relief of EDS?

    Many thanks. I enjoy your writing immensely.

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  7. The points listed in the book that I mentioned for Chronic Fatigue Syndrome that seem relevant to narcolepsy are: Letting go/Lu1, shoulder well/gb21, sea of vitality/b23 and b47, three mile point/st 36, bigger rushing/lv3, third eye point/gv24.5, sea of energy/cv6. These are all fatigue related points. You might also add some points from other sections, namely the insomnia section and even the immune system boosting section (as now it is thought that narcolepsy is linked with the immune system). You might try ordering a copy used off amazon; I had looked online for explanations of the points and they are out there but I thought they didn't compare with the simplicity and organization of this book. There are also some other sections that might be of interest, namely depression, headaches, pain, and an overall wellness section.
    Good luck! and if you try it, I would love to hear from you as to what you thought of it...

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  8. Sorry, I overlooked the link to the book in your post. I'm ordering it immediately. Thanks.

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  9. me i do nothing and take nothing i just go with the flow and i still have my driver licence, i also learnt to control my subconscious mind not to panic when i awake

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  10. Thank you so much for posting this column. And no, I thought the article was the perfect length. One side effect of narcolepsy is that once the information is shared with others, either through a personal friend or like me through the Texas State Bar, one is surrounded by crazy people on drugs.

    For me, it all started at Georgetown Law. I have obvious narcolepsy and I attracted a former athlete, very handsome, but who also had a similar condition. While hopped on amphetamines, he grabbed me by the neck and started to shake me. So I withdrew from Georgetown as the school thought it was my fault somehow and I did not want to create a problem. I thought I would just reenroll at a school in Texas to complete my JD.

    Within a month of enrolling at St. Mary's Law School and reporting my symptoms to the Texas State Bar, I had three families move in around me who liked to use amphetamines and other drugs recreationally. At one point, I was drugged and left in a vehicle, where a Texas Judge (Wayne Christian) set me up for some type of DWI offense to show that I had a reaction with medication and had narcolepsy. The purpose was to get off one of his clients who had a cocaine problem and was ex-military. I could not study at home, and ended up retreating to live in my vehicle even, because the Bar and this judge had decided to disclose this information to every known drug addict in the country/state, and city.

    Even though I had passed the same courses at Georgetown Law with good grades, somehow St. Mary's Law decided that I had not met their minimum requirements to continue onto second year. I worked my butt off out of my car while the authorities decided to surround my house with recreational drug addicts.

    I have not received any money back and the Judge appears to use amphetamines as well. I'm not a doctor, but it does appear that way. I'd like justice primarily, but no local attorney will assist me. I do not want to be a paralegal and narcolepsy, especially mild narcolepsy would not discount someone's ability as an attorney -- ever.

    I realized that I was genetically selected to date athletes on amphetamines and probably be chased by drug addicts who want to use for the rest of my life. Even my adoptive parents at 16 used amphetamines, and I think they filed for custody so they could use within the household. I think of my adoptive stepmother who has no breast tissue and shows signs of amphetamine abuse as an example.

    Currently, she is trying to make it seem as if I used recreationally and both parents are denying the abuse as if the drugs were mine. I've never been interested in this and I think it is wrong that the State released the information and then set me up in some DWI offense where I was found in my vehicle with very little clothing, bruises, and sick after being drugged.

    I love to enjoy life, but what about this particular side effect of group stalking, State harassment, and a ruined legal career? I feel as if I am being forced into prostitution or a career dating athletes, and I am just not interested.

    I'd like at least 18 million to 80 million dollars in projected damages, and if you could please help me, then that would be great. This is wrong, and these people should be prosecuted. No one is above the law, and Texas is too hot for me anyway.

    I noticed, too, that when I retained an attorney, I was forced into a homeless state where it would appear as if I might hire someone as a hitman, which is even more ridiculous. It shows how hyped up the judge is on amphetamines and it does not reflect reality. I am willing to compensate anyone with my winnings if I receive assistance obviously. Please feel free to contact me at 210-888-9245 if you can assist.

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    1. Amphetamine induced paranoid psychosis? or a scam attempt?

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  11. That is the best comment I've ever read. I'm definitely not sleepy now!

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  12. Hi
    I'm on a gluten free diet too. Not sure that this helps the narcolepsy but a low GL / GI diet really seems to. My consultant recommended it to me so maybe there really is something in that (I guess as narcoleptics we probably respond badly to sugar-lows so minimizing these helps keep us on an even keel).
    I've tried the Neal's Yard remedies to roll energising thing with some success. It's an aromatherapy thing roll it on pulse points. Who knows if it's the action of doing it or the thing itself.
    The other thing that worked for me (to a degree) is pain. When at uni I used to pinch myself to the point of having very bruised arms to try to stay awake.
    My other suggestion is yoga, especially Pranyama. Yoga breathing. There are various types of breath which encourage vitality (bastrika, kalpabati for example) which do help. And a quick downward dog to get moving and get a bit more blood to my brain never did any harm.
    The bottom line is for me tho if it's a bad day there's not a lot I can do to stop the sleepiness, even if I can put it off for a little bit.
    The only other thing to perhaps add is that I find it immensely annoying that I can't do yoga meditation. I can do Pranyama with a much greater degree of success, although finding someone to teach you is pretty tricky.

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  13. Get rid of any mercury (amalgam) fillings and go ceramic. May want to take DMSA with a mercury chelation test. Get a liver function test and go to an all organic (or home grown) vegetable diet --> stay away from wheat (gluten) because it is high protein and go to rice.

    If you are having problems with gluten (high protein) double check that Liver Function Test ($200-400).

    Mercury in tooth fillings is toxic. Very hard on kidneys/liver. You start having problems with high protein foods and will urinate alot especially when drinking water, but you need the water. By getting rid of the mercury and going all vegetable (low protein) you give your body the chance to recuperate and start pulling the mercury out. A chelator like DMSA can help, but also can take away calcium (a metal) so only tempory use is encouraged. Just buying a bottle any trying it when you get mercury vapor headaches would be the cheapest test for mercury poisoning.

    Mercury gives you Narcolepsy, but once you have Narcolepsy it is a nervous system/brain issue. Getting rid of the mercury will not stop the narcolepsy, but you rid the cause.

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    1. I have narcolepsy, and have never had a filling, let alone exposure to mercury.

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  14. You made me sleepy and pretty much killed all my hope. Thanks for nothing miss wanna be MD. Fuck

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  15. A good majority of these drugs are illegal because it makes more money that way. Sad the way things work these days.

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  16. I have had a LOT of luck with acupuncture. It has helped increase energy, fight depression, and even increase sex drive and help anxiety. I would recommend it to anyone who is looking for an alternative treatment. I saw results after 3 visits but everyone is different.

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  17. I have lived with “Narcolepsy” since I was eighteen. I am now seventy one. I may not be an expert but I know quite a bit about mine. I say mine as it appears that there is more than one cause for it. My Narcolepsy is the result of a defective immune system gene HLA-B27 which also causes ankylosing spondylitis.

    My advice to anyone with any problem in life is to get to know your limitations and live with them. I stay on my feet when I need to stay awake. If I’m driving I learn a new song
    and I sing at the top of my lungs. Once I know the song and do not have to think that doesn’t work so I learn a new one. I must keep my mind actively thinking. I ask my wife to have me explain something to her in extreme detail. (KEEP YOUR MIND ACTIVELY WORKING) and you will stay awake.

    I wish I could say it gets better as you get older, but it doesn’t. Have a positive attitude about life and everything in it. I make jokes about my problems and I wouldn’t trade them for someone else’s. I only hope I did not pass this on to any of my children, and it looks as if I didn't.

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  18. I was diagnosed with narcolepsy when I was 16. I have been on pretty much every medication, and unfortunately, I am severely allergic to Provigil. I stopped taking dexedrine cold turkey when I found out I was pregnant six years ago and stayed off medication until my son was 2. When I was pregnant and breastfeeding, I had almost no symptoms of narcolepsy. I then returned to taking dexedrine and last year I started having heart issues and decided to go the natural route. I take 1500mg of L-tyrosine and one dose of Rhodiola every day. I also go to acupuncture 2 times a month. This seems to be working well, but I DO get 7-10 hours of sleep a night. Eating a low-carb diet greatly improves my ability to stay awake as does walking every day. I will also be getting a standing desk at work - sitting just puts me out!. I REALLY wish doctors would have told me early on that there were other routes to maintaining a healthy life with narcolopsy. The stimulants DO cause long term heart issues!!! I have visited a naturopathic doctor who specializes in sleep disorders. Sleep doctors are great, but they see you only as a brain and not your whole body or life.

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    1. Hello, and thanks for your post. My 18 year old daughter has been experiencing symptoms of a sleep disorder over the past year, of which, we recently visited a Neurologist who referred her to have an MRI, an EKG and a day and night time sleep study. The technician at the sleep center told us that she shows signs of narcolepsy with cataplexy. As a result, we had the follow up appointment with the Neurologist last week and he could not give a definitive answer because the slerp test results had not been received. Since my daughter is currently experiencing issues with falling asleep frequently, he prescribed Nuvigil for her to try to seeif this helps with keeping here awake while she is at work and in college. I honestly must say, that I am truly concerned as this is my first time hearing about narcolepsy, and am wondering why this has happened as we do not have anyone in our families that have been diagnosed with narcolepsy. Of course, she is scared and I feel like I am helpless because I truly do not know what she is experiencing, nor how to help, so I started searching the internet and came across this post. The only thing I am starting to think about is an issue when I delivered her in 94 where the epidural was placed in an air pocket in my back and the drug was administered into my bloodstream, which affected her. I don't know, but I'm going to look back into that as well. If there is any additional information that you can provide about your experiences, we would greatly appreciate it. Thanks in advance for your assistance. Signed a concerned parent!!!

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  19. Has anyone tried l-tyrosine. This is an amino-acid and it seems to work quite well. I've read of people taking huge doses but I just take 500mg every 4 hours but I stop 4 hours before bed.

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    1. No, but I've been taking 5-HTP. It seems to help with feeling more cognitively awake, but I take it at night because, ironically, it makes me drowsy.

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  20. Hi friend,
    Even I feel sleepy all time. After sleeping for more than 8 hours at night, I feel sleepy at day time as well. Sleep is the biggest enemy of mine in my life. If I will get a rid over my sleep, I am sure I can achieve my dreams very soon. I never feel lost of muscles even I sleep for as long as I can but my eyes and head can't think about anything else rather than sleepiness. Sometimes I feel like sleep is more important for me than food to stay alive. When I talked to my parents about Narcolepsy they made fun of it. I live in India, in a metro city. I do not think there is any good doctor to cure it. All I am trying search any home or herbal treatment for it.

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    1. Nikhil,

      there are a number of medical conditions that can cause extreme daytime sleepiness. narcolepsy is only one of these, and it is not the first one doctors would test for because it is not very common. first you should see your regular doctor and tell them about your sleepiness, then if all your tests are normal, you should see a neurologist and make sure everything is okay there (they can diagnose sleep disorders too at least in the US). and then once other things are ruled out like lyme disease, depression, anemia, etc. etc. they would then be able to determine that yes the problem is a sleep disorder and send you to a sleep clinic to determine which one you have (perhaps you have sleep apnea, that is very common, but it impossible to say without a sleep test, although it is more likely if you snore).
      I am sorry to say that if you do have narcolepsy, the only effective treatments are really a combination of lifestyle changes (including possibly scheduled short naps) and medication. there are no good home or herbal treatments.... and all the medications for narcolepsy would probably require your being diagnosed with narcolepsy...
      what i am saying is, you shouldn't be trying to diagnose yourself... unless of course you have a diagnosis and I misunderstood your situation, in which case I apologize.
      You did mention that you "never feel loss of muscles" (I assume you are talking about cataplexy?), which makes it even less likely that you have narcolepsy (although not impossible). However, only about 10% of narcoleptics do not have cataplexy.
      But like I said, I would not jump to the conclusion that you have Narcolepsy unless you have actually been diagnosed by a doctor. good luck.

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  21. I have a friend I love so much has narcolepsy. I have been looking into ways to help. Recently I just found out that it took me 4 hours later for medicine which put me to sleep to rest.(for normal people is half an hour)I wonder if the researchers are going into this field to create new medicine or new treatment from this direction. Some people have more energy level, they can run a test to find out what is the difference and what remedies are available.

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  22. I am 37 years old; I have had Narcolepsy since I was 13. I was a highly accomplished athlete and straight "A" student until I was diagnosed. Narcolepsy has since taken over my life. I barely graduated H.S. because I slept through it. I tried to get my degree in college, but couldn't stay awake there either. I find it hard to have a job; I am unable to drive. I have medium cataplexy, but have major side effects( from trying to deal with the seizures I find myself curling my toes to brace myself from falling, which has left me with awful inflammation and hammer toes. I've been on all the classic meds at one point and time including Prozac, which many MD's tell me was ridiculous. It did however work for a period before the side effects won out. I am not currently taking anything but was taking Ritalin until I started to have side effects badly.

    Honestly I just want to be able to finish my college education and be able to drive, so that I can have a career and meet someone to marry and settle down with to start a family.

    I would like to thank everyone for their input. I totally agree with the 71 year old who said, KEEP BUSY. I too find that there are points and times where I can fight off the sleepiness to some degree if I had adequate rest; am on my feet.

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  23. i AM 68 YEARS OLD. I've never known one day without an episode, since before I started school when I was 7.
    God made herbs for food and for health. There was an herb for narcolepsy. It was not habit forming. It didn't make you lose your inhibitions like alcohol. You could take it every day for a month and if you had to skip a few days your body wouldn't shut down on you like it does with the drugs doctors give out. I'm not saying it was a cure but it allowed a person to live a normal life and to work and enjoy life in general. But that herb was cheap and you could grow it in a flower box or buy it in the store just like you can buy green tea. It was ephedra (Ma Haung). It was no more dangerous any than aspirin or coffee. But it did a wonderful job helping your mind to be clear and alert.Of course you know the problem. Not danger per se because there will always be someone who cannot tolerate food or medicine. Always. You can't stop something that helps people because a few cannot. But that is exactly what they do and have done. Not because of danger but because it does help people and they can't make money off it. All those poor souls with Narcolepsy who are literally slaves to the doctors, pouring millions of dollars into their and phamaceuticals pockets, wouldn't need doctors anymore. We've allowed doctors to become our God and allowed them to disallow what God our creator gave us to use to help ourself.

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  24. Wow...im glad God led me to this blog. I m tearing up now...lol
    These last few posts were sooo inspirational. Thank you. I agree completely. I'm 24, female and have had it probably all my life because I used to sleep, undisturbed when a small child. But I was tested in 9th grade. Almost a whole decade. And my sleep doctor would not approve of me driving at. 21 because I failed the sleep test by a long shot.
    I was and am still bitter toward sleep medicine...because their is no literal driving test for them to monitor your wakefulness in an actual car. I was tested in a recliner in a dark room reclined with no sound or stimulation whatsoever. Of course I failed.
    I haven't driven in one year since I was in my last car accident. But during that time I started and finished massage school, walked to school two-3days/week when my bf didnt pick me up, took ZUMBA twice/week and passed my state boards on the first try all without medication. I haven't taken Provigil in over 2 years. I decided it is poison. I'm young with no kids and a kept woman-my parents are Able to help me and have made sure I will always be ok. S I'm blessed. But now almost 25, I get discouraged..because I can't drive even during daylight...based on western medicinal facts! I want a normal relationship and kids and to be allowed to drive to a neighboring city( as I once did) without being a slave or test rat for the cause. Please pray for me and contact me if able if you have any other advice. I'd love to create an online discussion group for narcolepsy this year. God bless and keep in touch.faithworks247@gmail.com

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  25. I am undiagnosed, but have N symptoms since I was a teenager. Gluten/Dairy free diet and high protein diet help keep me from "needing" to sleep during the day, but my brain still feels so tired and foggy. But, if I let those things go the need to sleep during the day comes back.

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  26. I have been diagnosed with narcolepsy for18yrs now . I am 35. Took ritalin for years. Then provigil, then nuvigil. Now. Nothing.
    Nuvigil, gave severe pains in my lower legs and made my teeth hurt so bad i had a hard time brushing them.all of these drugs make me moody.

    Not drinking caffeine helps me, orange juice , eating really light meals,not setting down, no music at all while driving usually works, workout at night a few hours before bed. I will do a few jumping jacks before i drive. Gets the blood pumping a little. To much is bad though.
    If i am going to drive a long distance, i take my dog,every 5 mins she tries to look out my window,works well.

    In the winter ,i drive with no heat. Girlfriend wont hardly ride with me..
    Hope this helps someone.

    Red bull and energy drinks like it help for a day or 2. But u cant live on them and they stop having any affect at 3 days or so. Better to have no caffine at all

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  27. I am 21 years old and I was diagnosed with narcolepsy when I was 12 years old. I went from getting all A's and being very energetic to failing classes and almost failed high school. I am supposed to be graduating college but I sleep through most classes that I end up having to drop. After three years off college I'm still considered a "Freshman". I was prescribed provigal when first diagnosed. But it didn't work too well. I got switched to concerta all throughout high school. I did fine with that but quit taking it because the side affects were unbearable. I have been in two car accidents as the result of falling asleep driving. I'm looking for more natural ways to live with this disorder rather than being on medication all my life. I do not respond well tho prescribed medicines. I decided to try a new diet, acupuncture seems to help a lot of people. I'm also trying to get more fit and exercise more and eat more organic foods. Hopefully I see progress within the next six months.

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  28. I find it a waste of time to read an article that indicates help and only get a lot of negative input. It would be better to save time to say you have no natural remedies.

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