Alternative and “natural” treatments for Narcolepsy

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?